With Help from Our Friends

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Ode to Michele on Her 65^th

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She tried her best and in the past harassed us,

But she just couldn’t slip December 2^nd past us. [Bill]

No way Michele, c’est vrai, forget it,

Here’s something even tous can’t edit. [Julie]

--- ---

At Passover time, we’ve been asked to tell

How our ancestors in Egypt used to dwell. [Sandy]

Then life with Pharaoh began to unravel,

And the Jewish folks were forced to travel. [Marshall]

Michele’s clan offered a similar story,

Though not quite the same in stature or glory. [Sandy]

From Egypt Michele was forced to flee

And now the rest is history. [Marshall]

From Cairo to London to Hong Kong she wandered.

Why not NYC and San Francisco she pondered

Around the world, from many lands she reported.

She moved so often you’d think she was deported. [Kim]

Along the way on her various stops,

She perfected her journalistic chops. [Andrew]

She worked in Vietnam -- sans bon bons,

But left when we let Saigon be Saigons. [Ken}

The war in Asia filled her with strife,

Then Paris offered her the good life.

But there was much more to see,

So off she was to Tel-Aviv.

Someone told her Rockwall would be great,

But there are far better places in this state.

So Austin is now her home sweet home,

With so many friends, never again to roam.

--- --- ---

At the paper she wrote news, features and shorts.

She did everything else, except for sports. [Andrew]

Michele ruled over the business desk domain.

With her in charge, it was never quite the same. [Kim]

In Washington her prowess grew.

She wrote a column, front pagers, too. [Ted]

She was our expert on topics like NAFTA.

She quit smoking then, she knew she’d hafta. [Debra]

She returned to Austin and the Legislature,

Always working hard because it’s her nature. [Ralph]

Green card in hand she wanted more,

Hoping to be counted in the electoral score. [Barbara]

Because Michele is nobody’s fool,

She knew her citizenship could be dual. [Ted]

She called a congressman, one of San Antone’s.

Became a Yank, saying “Let them eat scones.” [Ken]

She conquered Austin, then took on the Capitol,

Where she found the bastards all so laughable. [Ross]

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She loves kids, but carolers made her jangle.

When on deadline their tiny necks she’d strangle. [Renee]

Among her good friends is ex-Mayor Bruce Todd,

But even he should not sing “Feliz Navidade.” [Elizabeth]

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Since she was good at telling others what to do,

Consulting was a natural thing to pursue. [Bruce]

George Dubya Bush and Karen Hughes,

Soon others were seeking her vociferous views. [Renee]

Cornyn and Carole and the GOP,

But enough politics, it was time to flee. [Bill]

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So once more, it was back to the paper,

And the big pink dome for a final caper. [Linda]

And soon, she recalled, this took a lot of meds.

So she fled down the street, until she got to St. Ed’s. [Ross]

Nobody who went there had ever talked faster,

So in no time at all, they declared her a master. [Sharon]

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In front of her class, she stood 4 foot 10,

And all of her students wanted to sign up again. [Bruce]

She had the kid reporters all in a tizzy.

Michele barking orders would make anyone dizzy. [Mary Ann]

But she remade the program until it was stellar,

Leaving her mark on every girl and feller. [Elizabeth]

----- ----- -----

She taught everyone from far and near,

And along the way married an engineer. [Ralph]

We’ve seen lots of weddings, but her’s was a treat.

Not often do you see a couple that sweet. [Mary Ann]

We grew to know Robert as a really great pal,

And all know for certain he picked the right gal. [Linda]

Their home is up on the mountain of cat.

Where friends always find their welcome mat. [Ted}

Through all the years and all the hard work,

Her family and friendships she never did shirk. [Barbara]

She’s always made time to see that we feel

Her love and kindness, and know that it’s real. [Debra]

We’ve bragged on Michele, though we all have our flaws,

Thank goodness for flexible immigration laws. [Ken]

----- ----- ----- -----

So today you’ve reached 65 years.

Happy birthday to you, and to Britney Spears! [Julie]

　

　

　

Thankful

Thanksgiving 2009

What am I thankful for?

Michele, Michele, Michele, Michele, Michele

I am thankful that she has broaden my horizons

and has shown me a world that I would have

never known without her.

I am thankful that she inspires me.

I am thankful to have her to love.

I am thankful to be loved by her.

I am thankful that she has changed my life.

Although life may not turn out exactly as hoped,

I will always be thankful for Michele.

RKS

NYT Article on GBM

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NYT Tue 17 Nov

Here is a new piece on GBM from the New York Times. Avastin is one of the drugs that Michele is taking every three weeks by infusion (IV).

http://www.nytimes.com/2009/11/17/health/17tumor.html?_r=1&scp=1&sq=gbm%20%20denise%20grady&st=cse

RKS

Brief Report

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Another Great MRI

(My resident managing editor has directed that this posting be brief.)

Michele had a MRI on Wednesday, 11 November.

It was clean and showed no evidence of cancer.

Dr. Chadha, her oncologist, has extended the MRI interval from six to nine weeks.

Next MRI will be o/a Wednesday, 13 January.

She will remain on the same three week chemotherapy protocol indefinitely.

RKS

-30-

Fantastic MRI

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No Sign of Active Cancer . .

Thursday 01 Oct 2009
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Yesterday’s MRI results: “No evidence of any abnormal growth. There is only a very minimal amount of gliosis (scar tissue) around the region of the prior resection (surgery).“

This is the best possible news. The Avastin/CPT 11 treatment seems to be working. Michele will continue that treatment indefinitely--two weeks on, one week off.

Next MRI will be in early November.

RKS
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Port Report

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Success 16 September 2009

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The surgically implanted power port worked well during blood sampling and IV infusion this month. Both were painless. However, contrary to what one would expect, the IV took the same length of time as before. The round trip from home and back is about seven hours.

This chemotherapy continues to have a much greater impact on Michele than the Temodar treatments earlier this year. Michele is pretty much wiped out all day on Saturdays and spends most of that day in bed. The treatment seems to take a day to kick in and kick butt.

This week’s treatment side effect was a potassium deficiency--easily corrected with five inexpensive and easy to take pills.

Michele is feeling better early in the week. On Tuesday, she was feeling well enough to attend a very enjoyable dinner meeting at the Headliner’s Club. It was the first major social event we have been to in months.

Hopefully, things will be pretty routine for the rest of the month.

　

RKS

　

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So, How is Michele Doing?

　

A State of Mind. 07 Sep 09

　

In brief, not very well lately. The past six months have been hard on us.

The current chemotherapy (Avastin and CPT-11) is having a much greater impact on Michele than the earlier treatments. The drugs for the side effects, added to the “power port” surgery last week ( 26 August ) have made Michele very tired and run down for the past two weeks. Mobility, memory and talking presented challenges this week. We expect that she will get better. She did not have chemotherapy last week, but will begin it again Thursday.

Michele’s normal routine is to be in bed by 9pm each evening and to get up sometime after 9am. She also tries to nap every afternoon from 2pm to 5pm.

Two out of three Thursdays are pretty much spent at the doctor’s office receiving infusions (IV ). We have medical appointments on the “resting” Thursdays for blood work and a in depth medical review. We also normally have a one hour appointment every Wednesday. That does not leave much time to get many other things accomplished.

Probably the best time to phone Michele is between 10am and noon any day except Thursday. An hour after wakeup because you will want to make sure that she has had time to get at least one cup of coffee. Cell phone or landline will work.

E-mails are always good--just do not expect a reply.

Michele finds cards delightful.

For you “Lunch Ladies” she occasionally does have lunch out, but having lunch at home generally works better.

For any social activity, we recommend that you send the details by e-mail, including your phone number. Phoning ahead to find out if Michele is up to the activity is prudent. She has had to cancel most of her appointments for the past few days.

For Cat Mountain visitors, about thirty minutes to an hour is Michele’s endurance limit.

Former students and staff should contact James Armstrong for a fall event being planned.

Medical Summary and Update

Summary: We are in the middle of the second round of chemotherapy, which will last through November. On or about 30 September, Michele will have her next MRI which we expect to be inconclusive. The MRI scheduled for late November will determine our future course.


Where we have been and where we are going.

06 Sep 09


On 27 February 2009, Michele had a seizure.

On 04 March, Michele was diagnosed with glioblastoma multiforme (GBM) in her brain’s left temporal lobe (above and in front of her left ear). This is the same brain cancer that Senator Kennedy had. The New York Times newspaper has published a series of articles on cancer and GBM. ( See http://www.nytimes.com/2009/08/28/health/28brain.html?_r=5&ref=health ) There is no cure and treatment is especially difficult. Survivability is measured in weeks.

On 09 March, Michele had brain surgery, which was completely successful and removed all visible traces of the cancer. However, it was known at the time that some invisible traces of the cancer remained. She underwent gamma radiation treatment and chemotherapy (Temodar / Temozolomide) treatment from March through June. After undergoing treatment all those weeks, losing her hair and being sick for months, the treatment was ineffective and the cancer was found to be growing rapidly.

On 23 July, Michele had a highly risky second surgery. Results were far above expectations. Once again, all visible signs of the cancer were removed with no apparent additional brain damage. ( M D Anderson recommended against the surgery as being too dangerous, but Kit Fox, our surgeon, said he could do it effectively and safely, and did. )

On 10 August, Michele began chemotherapy again, this time with Avastin ( Bevacizumab ) and CPT-11 ( Irinotecan ) – the newest and one of the oldest chemotherapy FDA approved options for GBM. Avastin inhibits the growth of blood vessels. The main side effects are hypertension and heightened risk of bleeding and interference with wound healing. The most significant adverse effects of CPT - 11 are severe diarrhea and extreme suppression of the immune system, which makes Michele highly vulnerable to infections. Radiation therapy is no longer an option—it is so harsh that it can only be administered once every two years.

The current chemotherapy is given in a three-week cycle -- two weeks on and one week off to rest. The drugs are given one day a week (Thursdays) intravenously (IV). It takes about six hours to complete the procedure. The drugs are much harsher than Temodar, which was administered in a pill format. The treatment is painful and has made Michele much more tired and worn out as compared to the earlier procedures. After six weeks of treatment, on or about 30 September, Michele will have her first MRI under this new protocol. We do not expect any decisive information to be obtained from that MRI. Avastin works relatively slowly and may take months to have an impact. Hence, we shall go through another six weeks of treatment and have another MRI in November. If the November results are good, she will be on the three-week cycle forever. If not good, we shall try something else.


One of the side effects of chemotherapy is increased vulnerability to infections. The drugs attack fast growing cells throughout the body -- cancer cells, hair cells, fingernails, and blood cell producing bone marrow. Of particular concern are white blood cells, which fight infections. Michele’s white blood cell count fell to half of the desired count in August and she had a rather painful ten-minute long injection of a drug designed to increase white blood cell production. As is typical throughout this entire treatment process, we are constantly taking drugs to counter side effects of other drugs. The white blood cell count has improved dramatically, but is still less than desired.

A side effect (one of many) of treatment, IV’s, drawing blood samples and testing is that all of Michele’s veins in her left arm have collapsed and can no longer be stuck with a needle. She has one six-inch long strip in her right arm that can be used. So, on 26 August, we went back to the hospital and had a “power port” surgically implanted in Michele’s chest.

The power port looks like a small derby hat and is about an inch wide and one half inch high (2.7cm x 1.2 cm) and has a soft plastic top, metal bottom and a tube (catheter) about eight inches (20cm) long. The body of the power port is completely under the skin on her upper left chest. The catheter runs under the skin, from the port, over her collarbone, and then into a vein above her heart. To use, the IV needle penetrates the skin above the port, goes through the soft plastic top, and is stopped by the metal base. The drugs are then pumped into the port and to the vein.

In summary, we are in the middle of the second round of chemotherapy, which will last through November. On or about 30 September, Michele will have her next MRI, which we expect to be inconclusive. The MRI scheduled for late November will determine our future course.


RKS

Sleeping on Cat Mountain

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Monday Noon

The First Day Home

Upon arriving home Sunday, Michele immediately took a nap. Refreshed, she had a bowl of her favorite soup (thanks M Susswein) then went back to bed for an early afternoon nap.

She woke up just in time to have dinner, delivered by Eat Out In, (thanks to many friends). Dinner was liver and onions ( I know that is disgusting, but I only report the news as I find it. )

Then it was of course, as you might guess, back to bed for a quick read of the newspaper, and fast asleep by 9pm.

I thought about waking her up at midnight to ask if she wanted a sleeping pill, but her sense of humor is not well developed, and I had second thoughts.

At 9am Monday, I heard her muttering in her sleep, over and over again a single word: “coffee.” Things seem to be getting back to normal.

And with things getting back to normal, this blog will close down for a few weeks. We have two surgery follow up doctor appointments scheduled and do not expect much of anything to change until chemo starts again in August.

Daughter Deborah and granddaughter Annabel are in Austin this week to make sure that Michele is well taken care of. Bill and Carrie will be in from Atlanta next week and Kenneth (my son) and Heidi following them.


RKS

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Birdie was WRONG

Sunday 1030am

Home Again

The fifth floor had some kind of party last night and Michele was not invited. So, if they are going to treat her that way, she decided to come home two days early.

Dr Fox came by at 930am and had the release papers signed by 945.

She expects to have extended nap times at home for the next few days, but expects to be reading all of her email messages in her spare time.

RKS

A Little Birdie Told Me That . . .

The birdie told Michele that she might be going home Monday.

All Quiet on the Hospital Front

Saturday

Not much happening--just recovering from the surgery. Michele has done some walking. Talking and word selection are sometimes difficult, but as after the March surgery, we expect that to improve in a few days as the swelling decreases.

Moving On Up

Friday Noon

Back to the Fifth Floor

Michele has, as is her custom, continued to make remarkable progress. I think that she has displaced Carol Keyton Rylander Strayhorn as the champion "One Tough Grandma."

Dr Fox released her from ICU this morning and she is now in room 578--ready to sleep away the afternoon as soon as she has a belated shower.

RKS

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Great Post OP MRI

Thursday 930 pm

Nearly Clean MRI

To back up a little, Dr Fox did not want to wait until tomorrow morning for the post op MRI and requested that the MRI be performed at the earliest practical time--which was 430pm today.

Dr Fox reviewed the MRI at his home and phoned us in ICU shortly after 6pm. He said that the results exceeded his earlier expectations of 90 to 95% removal and that nearly all of the cancer had been removed.

We'll review the pictures together tomorrow morning.

On that happy note, goodnight--it has been a long day.

RKS

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Sleep and More Sleep

Thursday 5pm

ZZZZZZZZ ZZZZZZZZ

It has been a quiet afternoon in our home ICU. Michele has spent the whole afternoon sleeping. Dr Fox had been told that she did not receive adequate pain management immediately after arriving in the ICU in March. Not so today.

For those of you who bet against me on coffee--you lost. Not a word from Michele about coffee since 6am this morning.

For those of you who bet on her cell phone--you won. BIG time. About every third time when she wakes up, she asks for her cell phone because she promised to call someone "after surgery." So far she hasn't been able to complete a call before falling asleep again. So we retrieve the phone and turn it off again. Those who received that promise should know that the heart is willing--the rest of the body just won't cooperate.

Michele returned from her post-op MRI, and surprised us by asking for dinner! So, in a few minutes, she'll be grazing on a garden salad and chugging back a well-deserved glass of wine.

She'll most likely be transferred out to the normal floor sometime tomorrow.

RKS

Successful Surgery

Michele did great again!

The surgical procedure took about two hours and she was in recovery by 10:30am. She tolerated the procedure well, and talked all the way through it just like the first time.

She's now in ICU and resting comfortably thanks to the usual medication cocktail.

A post OP MRI is scheduled for tomorrow morning, bright and early, as always.

RKS

Bed Time for Mich

Wednesday 830pm

Early to bed. Early to rise.

After a couple of glasses of wine with dinner, Michele began to doze, then woke up and asked for a sleeping pill, which was soon delivered. And Michele was quickly delivered to dream land.

Her day Thursday will begin at dark thirty (4:30am) with drawing blood for lab work. Awaking before dawn should put Michele in an interesting mood--especially since she cannot have coffee before the surgery. I bet that by the time she goes to ICU Thursday afternoon that she will have forgotten all about not yet having her daily coffee jolt.

RKS

On the Fifth Floor Again

545pm Wednesday

Here We Sit, Like .. .. ..

My years of experience in the military and government service are paying off--after arriving at the hospital at 1pm, Michele has finally gone down for her MRI. Actually, to "hurry up and wait" isn't a problem since we have nothing else to do until early Wednesday morning. Actually, I don't have anything to do during the surgery since they (thankfully) don't allow husbands in the OR.

Son Warren and daughter Deborah are also here to give aid and comfort, so the waiting arround with nothing to do except talk is actually quite refreshing--no distractions except an occasional nurse checking up on Michele. (We have secretly turned off Michele's phone.)

RKS

Surgery Again

Surgery Scheduled for Thursday

After considerable thought and consultation, Michele will be having brain surgery again. The objective is to remove as much of the cancer and brain scar tissue as possible. There are two objectives. One, of course, is to have fewer cancer cells to treat with chemotherapy. The second is to enable clearer MRI’s since the scar tissue appears very similar to cancer in a MRI. In the June MRI it was difficult to see what was scar tissue and what was cancer. The radiation appeared to have caused quite a bit of damage.

Michele will check into the hospital Wednesday afternoon for a series of tests. The surgery will be conducted Thursday morning, 23 July. We expect her to be in the intensive care unit from Thursday afternoon until some time Friday, when she will return to a standard recovery room. We expect her to be sedated and basically asleep through Saturday at noon. If things go well, she could be home Tuesday.


Michele has asked that friends send cards and notes rather than flowers. In March, we actually ran out of room to put all the flowers. She has received many cards and notes from friends and former students that have been very thoughtful and lifted her spirits. She cherishes them. Our home address is 4105 Cat Mountain Dr, Austin TX 78731 3727.

She will be operating email through her new I-phone, so long responses will be impossible. We will not be sending out very many emails either, but will try to add posts to the blog frequently.

Trip to M D Anderson Friday

A Fresh Start

We went to MD Anderson in Houston on Friday for a second opinion.


Dr Monica E Loghin, the oncologist, thinks that the proposed surgery next week is too risky because she believes that the cancer has penetrated the middle cerebral artery and suggests that we enroll in a Phase I experimental study at MDA that uses Delta-24 adenovirus. The study began in December 2008 and has had three participants. The Delta-24 virus has helped two of the three.


(For you medics, see MDACC Study Summary ID01-310, http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/ID01-310 )



We discussed Dr Loghin's concerns with our surgeon, Kit Fox, by telephone. He believes that he can perform the surgery in relative safety and does not believe that the cancer has breached the middle cerebral artery. We will meet with Dr Fox Monday afternoon.


Our current thinking is that we will stick with the standard treatment, approved by the FDA, and
1. Have a radiologist closely review the artery/cancer relationship.
2. Have the surgery on Thursday, 23 July in Austin.
3. Begin the standard Avastin + CPT 11 chemotherapy in August, also in Austin.


We are optimistic that the surgeon will remove as much cancer as possible without affecting Michele's speech or disturbing major blood vessels. After several disappointments, we are hoping that this new surgery will lay the groundwork for a new and effective chemotherapy.


Thanks to everyone for your prayers and good wishes.


MTK and RKS

Rapid Tumor Growth

15 July MRI Shows Continued Growth

We took a new MRI this morning (Wed 15 July) and subsequently met with our surgeon, Kit Fox. The initial review was not good. One measurement of the tumor increased from 8.5 mm to 16 mm. Kit believes that he can successfully remove as much as 95 percent of the recurrent growth.

We will meet with our Austin oncologist Thursday and the MD Anderson oncologist on Friday. However, from our previous discussions, the best treatment for growth recurrence is surgery followed by a different chemotherapy, most likely Avastin.

Our actual decision will not be made until after Friday, but the decision will most likely be surgery on Thursday morning, 23 July. Michele would be discharged to home on Tuesday, 28 July, with about another two weeks at home of strict bed rest.

Because of our stress level while trying to make these difficult decisions, please hold off on the phone calls until next week.

Thanks to all of Michele’s friends who have been so helpful.

Best,

Robert

Outcomes and Choices

12 July; Outcomes and Choices

As many of you know, I took an MRI in June, feeling very optimistic. Unfortunately, the outcome was very disappointing. I am taking an MRI again on July 15, this time with mixed expectations. I hope the treatment has been effective.

This next week, I will see my surgeon and doctor and go to MD Anderson in Houston. We will decide whether to have another round of surgery and will also decide on the next phase of chemo treatment. There are several different treatments from which to choose. Although we are “penciled in” for surgery on July 23, everything depends upon the outcome of the MRI. I do not want to have surgery unless it is absolutely required.

Given all these decision, I have stayed home as much as I can, cut back on phone calls, rested and tried to prepare for a difficult time.

I hope I will be able to report a successful statement on this blog and tell friends and family that all is going well.

Thanks again to all of you. I send you all my love.

Michele Kay

22-27 Jun -- Busy Week

Monday 27 June -- Back to M. D. Anderson, Houston

Robert and I met with an assistant professsor of neuro-oncology at M. D. Anderson Monday morning for a second opinion. She reviewed my medical data and treatment plan and concurred with the decisions made so far.

She was impressed with Dr. Fox’s March surgery but, like many others here, she was taken aback at the results shown in the June MRI. Like everyone else, she is not sure, but believes that recurrence of cancer is the most likely explanation. We will meet with her again two days after the 15 July MRI and five days before the proposed surgery date. All future treatment hinges upon the July MRI.

The neuro-oncologist believes that I might be a candidate for one of MDA’s experimental drug programs. We will see about that in July.

Sunday, 28 June -- Warren and Deborah Visit

My son, Warren, came in from California Thursday night and stayed through Sunday. My daughter, Deborah, and granddaughter, Annabel, were also with us as were grandsons Keith and Brennan. It is always a joy to be with family.

Thursday 25 June – Treatment Developments

My medical team had a peer review meeting this week. It was decided to “pencil in” surgery for me on Thursday, 23 July, again by Dr. Fox at St David’s Hospital on 32d Street. The surgery will be done only if the MRI on 15 July shows continuing rapid growth.

Monday 22 June -- Beginning of 2nd Phase Chemo

June 22 was the beginning of the second phase of chemotherapy. It was the same drug, Temodar, as I took during the first phase, but at twice the dosage as before, when I also had radiation therapy. (Radiation can only be used once every two years.) I was able to tolerate the first phase well, but this double dose made me feel pretty awful. I will have a 21 day rest period before the next round of Temodar. I will need it. We don’t know whether we’ll continue Temodar.

Thanks for all the cards and calls. I wish I had the energy to thank everyone personally.

Love you all,

Michele

Down, but not Out

Down, but not out. Friday, 19 Jun 09

We had a long meeting with Dr. Kit Fox, our surgeon, on Friday afternoon. Do only supremely confident people become surgeons, or does their training bring out that trait? The discussion was mostly the same as Thursday's, just a lot more positive in how it was said.

Although he was surprised and disappointed by this week’s MRI , Dr. Fox believes that recovery is still possible. He believes that, if necessary, he can safely remove most of the “high contrast” area around the initial surgery site. However, he does not think that may be necessary, or even useful, based on what we know today.

Although glioblastoma multiforme (GBM) is a rapidly growing, aggressive, cancer; it does not grow so fast that it is critical to do something immediately (unlike the initial surgery, which was needed to relieve pressure on the brain.) He feels like the “high contrast” area seen in the vicinity of the initial surgery is probably a combination of scar-like tissue and GBM.

The key to success is chemotherapy, not surgery. Surgery can never remove all of the cancer cells. Dr. Fox concurs with our oncologist and believes that the wisest approach is to continue with the previously planned Phase II Temodar chemo treatment and add an MRI on 15 July to see what changes have occurred in a month. If the area does not grow or even shrinks, we are on the right track. If it shows growth, we change the chemo treatment, most likely to Avastin. If Avastin does not control the tumor, we move on to other drugs and perhaps field trials of experimental dugs and procedures.

So, in short, we have options available and time to implement them.

The changes and options we are dealing with are difficult. We hope that the choices we deal with, whether from M.D. Anderson, Duke University, or any other university help us get a stronger handle on the disease and the future we are dealing with.

We’ll keep you posted. We love to hear from you. It gives us strength in our future.

Michele Kay

Michele Kay@aol.com

Bad News: 18 June 2009

We went to the doctor this afternoon to get the results of the MRI I took yesterday. Although not conclusive, the GBM cancer appears to have returned in the same area as before the March surgery. The concern is a “high contrast” area seen on the MRI.

The doctor, a chemo oncologist, says that he is not certain of the origin of the “high contrast” area. He says it could be tissue damage from the surgery or tissue damage from the seven weeks of gamma radiation treatment. But, he believes the most likely origin is a recurrence of cancer. He suggests that:
(a) We meet with the original surgeon Friday (tomorrow) to discuss new surgery as an option;
(b) We continue the planned Phase II treatment previously scheduled for next week;
(c) We have an additional MRI done on 15 July to see if there is any increased growth.

Our other doctor, a radiation oncologist, says that the “high contrast” area of the MRI is most probably a new growth of chemo/radiation resistant GBM. She believes that the chance of it being damaged brain tissue is possible but extremely remote.

We are meeting with the surgeon tomorrow, but we are more interested in his recommendations than in surgery because he has already indicated that the risks of resection surgery were severe, threatening the normal functions in the eloquent (speaking, reading, writing) areas of the brain.

We will spend the next few days investigating our options. We will be looking at recently approved chemo treatments and also will consider participating in experimental Phase II drug studies at major cancer research facilities. We have already begun discussions with Duke University.

We will be trying to keep all of our options open until July 15, when the next MRI is scheduled and we’ll need to decide on treatment options.

We will try to post another blog as soon as we have had time to think over everything.

Your support these last few months has been absolutely wonderful. I love to hear from all of you, but for the time being, please e-mail me. I need a little time to absorb the bad news.

Love to all of you,

Michele

Correction

Sorry. The plan is to have an MRI every two to three months, not weeks.

June 9th:Getting There

Robert and I are going to California for a long weekend, starting on Thursday. We get home on Monday. On Wednesday, I am scheduled for an MRI which will decide how successful the radio-chemo procecess has been. Seven-weeks was a long time and I sure hope it was productive.

Assuming this testing is successful, I will be getting an MRI every two weeks. I guess I will get used to the frequency of the MRI. Life is very different. But I think I will learn that the difference is something I will get used to. The first MRI may be tough, but repeated tests will become something I become used to. It is all very difficult, but the difficult is something we get used to.

Michele

17 May 2009: Progress

The first phase of my treatment -- seven weeks of radiation and chemotherapy -- is behind me. I can't say either was particularly pleasant, but the radiation was certainly the most difficult.
My doctor promises that that within the next two to three weeks, my brain still start working again and I will regain some energy. I will spend those weeks with my daughter Deborah, my son Warren, and their children.

I have scheduled an MRI on June 17. I get the results the next day. I obviously am hoping for a cancer-free report. I have to admit that I am nervous about the results of the MRI. But regardless of the results, I will take chemo one week a month until the end of the year.

I think the worst is behind me. I am optimistic that my reading comprehension, my memory, and my general understanding will gradually return. My physical condition also is improving slowly. Patience is not something I have much of, but I am learning that it can be developed.

So many friends have offered to drive me. Thank you, but I no longer need to impose on anyone. I can now get behind the wheel.

Because I can function about three hours a day, I am way behind in thank you notes, but I will eventually get there. Thanks again to all of you. I send you all my love.

Michele

3 May 2009: Progress

Seven weeks seemed interminable, but two weeks of treatment are now left, a period of time that seems manageable. I will be done with both the radiation and chemotherapy in mid-May and get an MRI in mid-June which I hope shows good results. Also in mid-June, I get back on chemotherapy only, this time for a week a month for six months. I am hoping that the side effects -- mostly extreme fatigue -- will not be as intense. I have regained my vision, but while I can read, I don't have the concentration or energy to handle more than newspapers or a magazine. I also have lost my hair -- a friend took me to buy some cute hats -- and my memory is pretty bad. If you call me, don't assume I remember our conversation. But overall, I feel better.

My son and daughter and their spouses were here last weekend for my son's birthday which was a lot of fun. This week, my twin cousins from Paris are coming for a quick visit.

As in weeks past, friends have been immensely helpful and supportive. I am trying to write thank you notes, but given my lack of concentration and exhuastion, the process is really slow. Please forgive the delay.

Thanks again. I will update this blog in two weeks when I bid a happy farewell to the radiation clinic.

Love, Michele

Into Week Three

Hi everyone. Things are moving along. I have started week three of radiation. Once this week is done, I will have four weeks to go. I have become used to the treatment. It seemed overwhelming at first, but it is now very routine.

The main problem I am having is side effects to medication. The most troublesome is fuzzy vision. It has been nearly a month since I have been able to read. But it is getting better. I have changed medication and my eyes are slowly beginning to function more normally. I am so behind on thank you notes. Please forgive the delay, but there is no much I can do until I can write.

I am also hoping to be able to read a newspaper again. I can't remember ever being so out of the loop.

As the treatment and medication get adjusted, I slowly start to feel better.

A friend gave me some very good advice. She suggested I set a time every day when the C word is not used. I love hearing from all of you, but I feel much better when I don't discuss my health. I have a tendency to talk about it, but it is not helpful. There is nothing new to say and talking about it serves only to relive the nightmare over and again. I love to hear from all of you and hope you will call and tell me what is going on in town and in your lives.

Hope you all had a good Easter. We went to Dallas and spent the weekend with Deborah, Chuck and Annabel. It was good to be with the children. I only wish Warren and his family were closer.

Thanks again for everything you do for us. I am overwhelmed by the kindness you have all shown me.

Love for now,

Michele

THE TREATMENT STARTS

I can't begin to thank everyone for cards, e-mails and food deliveries. My doctors tell me that my state of mind, while intangible, is important. The support I have received has been overwhelming and immensely helpful.

Among others, my friend Carrie Rosenthal, who lives in Atlanta and who has been a friend for nearly 40 years, flew in to be with me. My children and grandchildren were all here this weekend. Warren, Laura, Austin and Nate flew in from California; Deborah, Chuck and Annabel drove down from Dallas; Keith and Brennan live here. Having all the family together was a major psychological boost. The kids are absolutely wonderful.

Mae Stoll, who lives in Austin, cooked for all of us Saturday night.

So many of you brought us wonderful meals. Gail Miller is the most efficient organizer. I really don't know how to thank you all.

I am feeling better, but I am still very tired and simple things like putting food on the table is a major effort. My doctors tell me it is a combination of lengthy surgery and stress at the particularly awful diagnosis. But I am better. I have moved to our upstairs bedroom, I no longer need a walker and I really hope to be able to shop and cook soon.

Dr. Kit Fox, the surgeon, was well pleased with the surgery. My staples were removed from my head on 24 March. You don't appreciate washing your hair until it is too hard to do so. I no longer look like I have zippers in my head.

I started the radiation and chemical treatment Monday, 30 March. But the first step was having a mask made the week before. It is molded to fit on your face then during treatment, it is fixed to the table. They put radiation through the mask for 15 to 20 minutes. During the treatment, it is sometimes dark, sometimes you see blue, sometimes you feel movement. The goal is to be very still, while they put radition in your brain. It is a very strange sensation. It is not painful, but it is not particularly pleasant. I get to repeat this process every day, five days a week , for seven weeks.

Unfortunately, I got an allergic reaction to the iodine dye they used to make the mask on 23 March. I could not open my eyes, and my face and mouth were a mess. But it is slowly getting better.

I take chemotherapy by mouth--every day for seven weeks three hours after I have had a meal. I am told that my chances of nausea are reduced if I take it at night on an empty stomach. I take it at bedtime. So far so good.

We went to M.D.Anderson, the premier cancer center in Houston, 25-26 March. The person we talked to there said exactly the same thing everyone is saying here. He was just more harsh and the prognosis was more painful to absorb. When the news is really awful, I have a tendency to switch off. Barbara Panzer, our friend and travel agent put us up in a wonderful Starwood Hotel. It made an unpleasant day a lot more comfortable. But most important is that the consulation gave the comfort that we had chosen the right therapy. Basically, the treatment for the first round is pretty uniform. What no one knows is what to do is when the tumor grows back. Unfortunately, it always grows back. The issue is the lenth of time before that happens.

My challenge right now is to live the short-term. I hope you all help me enjoy the days, weeks, months, and I hope years ahead.

Thank you again for giving me the support that has given me the strength to move on.

Michele

Progress Report: March 19

Dear Friends:

Thanks so much to everyone for cards, calls, food, and good thoughts. I am overwhelmed with the friendship and support I have received. It has been wonderful to have tasty, healthy food delivered every day. You have all been such terrific friends, it has helped brighten my days and regain my confidence in my strength and ability to recuperate and fight this nasty thing.

I am feeling better every day and I have not taken a headache pain pill for two days. My headache is pretty much gone. I have not appreciated not having a headache until I got the horrendous one that followed the surgery. It was truly awful.

I had a medical check-up with my internist to make sure I was in good health before starting cancer treatnment. I met with Dr Wu, my radiologist, who explained the drill that was ahead of me and will meet with Dr Chadha, my oncologist, tomorrow for the same information.

On Tuesday next week, the staples on my scalp get removed which will be a huge relief. The next day we are going to Houston. We have a consultation/second opinion Thursday on the proposed treatment with a specialist at M.D. Anderson. The plan is to start the treatment on Monday March 30. I will go in to the South Austin facility every day for seven weeks with a break on the weekend.

My family has been wonderful. My daughter, son-in-law, and grand daughter are here this weekend and return next weekend, my two grandsons have come by a lot, and my son, daughter-in-law and two grandsons come in next weekend. Robert is going to Houston tomorrow to celebrate the medical graduation of his son Karl. It is very exciting and I am really sorry to be missing it.

Everything is now in the works and I am hoping this phase of radio/chemo is successful. At this point, I just have to go to appointments and let things happen.

Please feel free to call. I would love to hear from you. If you leave a voice mail, I will call you back. I get tired easily, but I would love to reconnect with the world and know what is going on and what everyone is doing.

I am way behind on my e-mails. I have not checked them for three weeks. I think I have 400 unread and will try to tackle them this weekend. If I have not answered, please bear with me. I will get there.

I send you all my thanks and very best wishes.

Love,

Michele

I am on line!

Thank you everyone for all your good thoughts, cards, flowers and wishes. Your support has meant a lot to me me and I really appreciate it. Knowing how many friends I have and how good you all are to me has helped me recover.

I am going to rest this week and try to get some strength. The following week my stiches come out and I start seven-weeks of chemotherapy along with radiation.

While the volume of phone calls makes me feel wonderful, it is hard to keep up with. Please give me a week of rest and in the meantime, post notes or send me e-mails.

Love to you all,

Michele

First Night Home: 13 hrs of Deep Sleep!

Michele really made the most of her first night home - went to sleep at 9pm, and woke up at 10am! Wow! I guess she really needed that! Her pain level is manageable and she is relatively comfortable, albeit a bit shakey on her feet still. A walker is being brought in, and since she's spending most of the time downstairs now, that should be a big help.

The main kitchen re-modelling work has been completed and the lady of the house declares her new kitchen "wonderful!" She's apparently getting pampered by her grandson Keith today, and is looking forward to a quiet dinner and a movie tonight.

The road ahead: More doctor visits and consultations are on the plate for next week, but the general consensus is that Michele will start a 6 week course of oral chemotherapy, and half way through that, she'll also start radiation therapy. Both types of treatments are expected to be a drain on her energy levels, so Michele was advised to build up her strength and energy reserves slowly over the next couple of weeks.

She hasn't seen this blog for a couple of days,...but tomorrow, she plans to look at her laptop. So, you friends out there....don't forget to leave her a note here. Her email inbox is probably busting at the seams....so please give her some time to get to yours, if you've written one to her. - Mae

Cat Mountain At Last!

Thursday, March 12th: After what seemed to Robert like a ton of paper work, Michele left St. David's this afternoon and is relieved to be in her own home. I talked to her a bit...she's tired but is sounding more like her old self. A good night's sleep is ahead...a new daily routine to be sorted out, and visits from the kids to look forward to.... - Mae

Michele Going Home Tomorrow!

8:40pm Wednesday: Doc told Michele she can go home when she wants to! So, she and all the colorful vegetation in her room will depart St. David's sometime tomorrow afternoon. Robert's carefully laid plans for an orderly move were scrambled and the kitchen remodelling kicked into super fast forward mode. Thanks to a lot of help from a lot of friends, though, everything is ready for her return home - Robert

Michele had a lot of activity today, and feels very tired. She's looking forward to a good night's sleep tonight, and to longer, undisturbed rest periods when she gets home. After this weekend, Michelle and her family will be planning their "routine" for the coming weeks. They send many thanks for the countless offers of help, and they assure their friends that they will be taking them up on them! Please just give them a bit of time to settle down and make sense of how best to do this. Send cards and notes to her home. She reads all of them, and will get around to responding. Keep her in your thoughts and prayers...

Michele will soon be strong enough to tell us all what she needs, when she needs it, exactly how she wants it done, for how long.....etc. I can't wait! - Mae

Up and About

3pm,Wednesday: Michele continues to make excellent progress in all areas.

The staff says that it's time for some serious walking. I thought you were supposed to get bed rest in a hospital. (Old school treatment discarded decades ago.) Michele is walkin' with a walker for 5-10 minutes each hour. Much slower than normal, but with increasing speed each hour. If she keeps improving as she has today, they may take away the walker tomorrow.

Of course, she does have the biggest shiner that I have ever seen on a woman, and the doctor says that she is going to be carrying traces of that for a little while....

Robert

I snapped a picture of Michele setting off on her promenade avec one of her strapping young grandsons....Mae

Monkeys and Shiners

Wednesday, 11th: Oh, yestereday, we forgot to mention that Michele had quite a bit of very annoying, and often painful swelling on the left side of her face and around her left eye. All normal, we were assured...just post-op fluid looking for somewhere to pool before getting re-absorbed. This afternoon, the swelling is almost gone. Now she just looks like she's recovering from a barroom brawl, and is sporting an impressive shiner. It's a bit yellow today...I'm sure it'll go through the lovely green and purple stages. I would love to follow its progress photographically, but I don't dare. So, I'm posting a much less interesting, "squishy" picture instead. She'll probably hate it, and I'll have to take it off, so enjoy it while you can!

A Short Stroll Down the Hall

5:30pm, Tuesday 10th, found Michele taking a short, but very steady walk down the hall, sitting up in a chair for a while, and then taking a much anticipated shower. Dined on chicken enchiladas, pico de gallo and guacamole (I guess hospital food has come a long way...) and sipped on some wine. She's had visits from members of her medical team. It has not been an easy afternoon, but Michele is on her way to regaining her strength....

She read this blog and all the comments...please keep posting!

Mae

Michele "GRADUATED" out of ICU!

2:00pm, Tuesday the 10th

Michele is now dozing comfortably in a private room on a regular floor. Except, of course, this is a very unusual room given the amount of greenery and flowers!!! There is simply no more surface area available to put more flowers vases...so, hold that urge, you folks out there! No more flowers in the hospital.... :-)

She still gets tired very quickly, and she's not returning phone calls or using her computer....Please leave messages here...

It's nice to see her in a regular room away from all the wires, and monitors and blips and beeps and all that stuff. Various docs came to check in n her before she left the ICU, and they're all pleased with her progress. The post-surgery MRI showed no visible signs of the tumor! Yippie!

So, all is proceeding according to schedule and her post-hospital course of therapy is being planned.

Mae

Michele Resting after MRI

11:30am - Tuesday 10th

All's well! Michele's in deep, restful sleep. She's had her post-op MRI done this morning, and slept through most of it (and if you can sleep through an MRI, you can sleep through anything!!).

She's expected to go to a regular floor later today....

Mae & Robert

Michele Awake & Doing Well

6am Tuesday about 18 hours

Michele slept most of the night. She woke up a couple of times with a bad headache, but that was quickly controlled with pain meds. After midnight the pain level has decreased significantly. She actually started asking about breakfast at 11pm, and whenever she'd wake up until it was finally served at 6am - WOW! A whole English muffin and a Starbucks Decaf! Can any who knows Michele believe that she wanted to eat breakfast? And at 6am?

For whomever gave her the red hand made blankety: She has grown as attached to it as Linus is in the "Peanuts" strip. It is just the right size for our little lady and the color is completely coordinated with her robe and gown. She asked for it at every time she woke up. Sometimes even before asking about breakfast.

Mae & Robert

Surgery Over. Michele doing well!

Surgery over - it lasted about three hours. Michele did superbly well through the whole thing! The docs were able to remove the tumor, and do not expect there to be significant damage to the surrounding areas as a result of the surgery. She was actually talking to the doctors during surgery (!) they were monitoring her speech and understanding, in both English and French, mind you! She apparently kept them on their toes...Anyway, she was alert and quite lucid after surgery, but in quite a bit of pain, which was quickly knocked out by some strong drugs. She is now in ICU where she will be through the night. She is sleeping and (oh, ever so sweetly) snoring like a baby. We're hoping she'll be in a regular room tomorrow, and home by the weekend.

Please remember: There's a "No Visitors" request on for the rest of the week. Check this site for news. We'll try to keep it as up to date as we can... Michele knows that all of you want to reach out to her....keep her in your thoughts and prayers...

Surgery Almost Done!!!

Great news! We were just told that Michele chatted through the surgery is doing well...almost done....that awful thing is outtathere!

Hello there, and thanks for checking up on Michele...

As many of you already know, Michele was diagnosed with a left temporal lobe brain tumor just last week. It was a sudden thing, and she's had no previous symptoms before last week's onset of severe headaches and some speech "confusion." Needless to say, all necessary scans, XRays, MRIs, etc were done and today, Monday, March 9th, Michele is having surgery to remove as much of the tumor as possible.

Michele sends heartfelt thanks to everyone for the deluge of flowers, well-wishes, concern and love that she's received over this past week. There have been hundreds of emails, and phone calls and many, many visitors. Michele's family and close friends will be focused on caring for her in during the recovery period. It is a stressfull time for all. Since it will be impossible to return every phone call and every email, updates about her progress will continue to be posted here...so please check back often.

The surgery started around noon and is expected to last three hours. She will be in the ICU overnight and the surgeons anticipate she can go to a regular floor tomorrow, and hopefully get home by the end of the week.

What Michele would LOVE from you..... Instead of emails, or more flowers (she has more than she can handle already!), please send her cards, photos, and notes by snail mail at her home: 4105 Cat Mountain Dr., Austin, TX. 78731

Please....we know it's hard, but ......the family requests that there be no more visitors at the hospital this week. Michele needs rest and quiet. Here family is around, and promise to reach out when they need help.

Thank you everyone for the love and concern! Check this site often!!