Thank you

All family and friends please take a bow.

The last MRI June 21st shows that the tumur has shrunk

It simply couldn't stand the power.

So to romantic evenings with Karl, "girls cannot let the girls to the beach with bare toes party", a wonderful week on the beach at San Diego where three familys watched our 7 children play on the beach.

I have had meals delivered to my door when I have little energy to even think about cooking, let alone excecuting a plan to do it.

I am cheering for my friends in Flagstaff for the horse show in July weekend, I love the forest air almost as much the ocean.

Then it will back to saddle for me. Slowwlyyyy.

I have lost the use in my in right hand but if I grip really hard then it helps with gripping a pen or knife and fork At least have an excuse for droping my food .
　
The CCNU / Avastin etc seems to done its work too.  CCNU is a once per month pill that has it is its own peculiar side effects during each part of the cycle. No nausea, mainly fatigue and weird and bruise and cuts etc. I take the next CCNU pill on June 27.

Avastin infusion every two weeks. No problems from that.

The Cyber Knife certainly left its mark on my short term memory.

My sister and her family left last week which was hard, but my my Mum arrives July 3rd.
　
　　

My Tumor is just not polite:)

So, according to all to all docs. concerned my tumor has not been the best behaved all along. Of course not:)

So after all of the surgery, radiation (CyberKnife MRI pending), Temador, Avastin etc. things are not getting better.

Any effect from the Temodar (on certain types of cell), has ended. We are switching CCNU which should help to clear up the other type of tumor cell.

Reasons to be cheerful, parts 1,2,3

   Ian Dury & The Blockheads

1. I am still here fighting. Will NOT give.

2. I love my family and friends.

3. I am still here fighting. Will NOT give.

 Credit Camille Groves Gangelhoff

CyberKnife Finished

The five days of CyberKnife ended as it started. As quietly as the "progression" was found.

I briefly met with the radiation-oncologist on day 4 who simply said that I look great usual but that the MRI in 4-6 will help to tell us more.

How many more of these creepy masks can I collect?



I will be having fun with my friends today competing in my second horse show since this began. I think that this is all in my own mind:)

CyberKnife

I had my mask fitting and CT for the CyberKnife today.

The treatment will not start until 30th April as the surgeon has to be there also. They also told me that there would no knives involved, now I am not so sure:)

My Dad is visiting again 2 May which is wonderful. I am very happy about that. I think that he is coming for sunshine as English summers do not involve much sun.

The verdict (today)

The verdict (today)

All of the docs had their meeting today and decided that I need more radiation.

Maybe 6 days (first round was 36 days), targeted at what they "think" is tumor growth.

I have an appointment with the radiation- onco on Tuesday. I will take the most aggressive treatment available to kick this thing in the a**.

The good news is that I had a fabulous ride again today:)

Progression vs pseudo progression

I haven't updated after the "MRI clinic" Tuesday 10th April, as things have been uncertain and still are.

Some enhancement of the tumor was found on the MRI. This could mean tumor growth.

It could also mean something they call pseudo progression - which is often distinguished between real tumor growth simply by the absence of symptoms. It is sometimes seen at this stage of therapy after radiation and temodar were combined.

The next day I had a perfusion MRI which is supposed to give an answer of which of the two it could be.

Well in this case it didn't. There is still no consensus.

Friday afternoon there is a meeting between the neuro-oncologist, radiation-oncologist, surgeon and radiologist. The options as I understand them are:

1. Continue as planned and do another MRI in 4 weeks.
2. Gamma Knife (targeted radiation)
3. More regular radiation.

I will hear more late afternoon Friday.

And now to my favorite photo of the last show:

Brain Tumor Clinic

Sounds like a barrel of laughs:)

In fact it is a meeting between the surgeon, the neuro-onco and the patient to review the latest MRI. This will mean my next MRI is moved up to April 10th, the morning of the clinic.

Nothing to worry about, I am doing well. If things are still going well with the MRI, my Avastin schedule will change to every three weeks, rather than every two. Chemo will continue as planned.

Riding three times this week. That will be sure to help with any potential nausea from the chemo:)

Happy Life

My next visit to the neuro-oncologist is tomorrow. No MRI, just instructions to take the next round of rat poison. I thought that I would update on the positive things that are going on in my life instead.


The children were at home last week for Spring Break and I loved spending time with them. One of my favorite activities was the visit to the Phoenix Herpetological Society.


Both children wanted to know why they couldn't take the snakes home.

  The weekend before that, thanks to encouragement and support from my friends and trainer, I competed in a horse show. I have a horse that I can trust, a trainer that I also trust, and the most amazing friends. I was simply overwhelmed by the love and support from all of my horse friends. THANK YOU. Horses really do have the gift to unite.

2nd MRI - good

The MRI was 8:30 this morning and then we saw the neuro-onco at 11.

Overall very good:

Tumor reduced in size
Less enhancement under the contrast agent (gadolinium)

"Small" area of gliosis in original GBM site from radiation, no flair. Too small to do anything, may just go. Not great news but to be expected given the circumstances.

Neuro-onco very happy that not only is the tumor stable (no growth), but has again shrunk. This tumor will not go away, but the idea is to keep it stable. i.e. no growth.

Start next round of Temador tonight for 5 days.
Avastin infusion fine, repeat in two week.
Will reduce the steroids by .5 mg after this round of chemo ends.
Next MRI in 2 months unless anything changes.

Feel very  happy about all.

Riding Champ tomorrow:)

steroids etc.

I had a dreadful chemo week (1 Feb). I originally put it down to not getting enough rest before the chemo but I literally slept Sat - Tues. I asked Karl to call the neuro - onco who said it was most likely the drop in decadron (4 - 2 ). She immediately put me back up and I have been feeling a little better.

It was very scary, sleeping all of the time, talking going downhill, stumbling. All because of the decadron dosage reduction. I was annoyed that they did the reduced decadron at the same time as the Temodar as it made it hard to tell what was going on.

I am slowing recovering, but still very tired and scared. I would rather stay at 4mg and take any side effects than go though that. MRI in two weeks which I am looking forward to (kind of)

The next round of Temodar (same day as the MRI Feb 29th) will be at a dose increased from 250mg to 300mg. Then 2 months after that will it be put up to 350mg. I had no idea that they did that. I bet I feel that more than my current dosage.

I had the Avastin infusion today which is always "fun", the nurses really are the best.

I only got to do one day of the horse camp and yesterday was the first time I have got on a horse since then. I am riding again tomorrow, always the best.

Speech therapy is great as usual. Even when I show up tired and not very motivated she always manages to get the best out of me, keeping my results on target without it seeming like work. What a great teacher.

To end on a good note - riding at 10am and then speech at 1:45.

So Now My Dad is leaving:(

So this is the third family member that has left since October, and I have not been able to wrestle their passports away. I am going to blame the chemo.

Dad leaves tomorrow early and we will all miss him.

Round one of High Dose Chemo Over

Jan 5th: Thursday day 1 - Monday day 5 (round 1 of 24). Oral, taken each night at bed.

I was prepared this time:
Drugs for nausea and constipation, kept up my exercise etc. Riding my special Charlie.

I am sure that the awesome MRI news helped too.

Avastin continues every two weeks. IV infusion at Barrow, takes about 40 mins. I just kick back and read a book.

Next round of chemo starts Feb. 1st. There will be 24 in total, one each month. (5 days out of each month)

Unless anything changes I wont bug you with the monthly chemo report:)

Oh, the speech therapy lady is mean, making me work harder each time. She adds percentages to my progress in each area and expects me to beat my score each time. If I don't she adds cryptic little notes to my file.

I will tell you about the fabulous Horse Clinic at the barn coming up when it happens. So excited!

Good News After First Post-Surgery MRI

Today was my first MRI post surgery / radiation / chemo. They delay the first one by about 4 weeks to avoid swelling etc. being mistaken for tumor growth. We chose to wait until after the holidays.

I had a couple of sleepless nights and waking up feeling sick with worry. This was in spite of trying to let go of things that I cannot change.

As the doc loaded the MRI images ( I thought that she would have already read it before we went in ) she reminded me that we were just looking for "no growth today".

What we actually saw was a comparison between a tumor the size of a chicken egg on the pre-surgery MRI and one the size of a marble taken this morning. The Dr. herself said this was a major surprise and extremely good news. She must have thought that I was crazy when I kept on asking the same question over and over "So this is good news then?"

I know that this is something that will never go away, I will be fighting this for the rest of my life. But tonight I am savouring a victory

Yippeee!!

Tonight I start 2 years of 5/23 Temodar at 250mg combined with Avastin for as long as possible. I will have an MRI every 2 months, or more often if things don't feel right.

On a lighter note, I have graduated from OT. They clearly thought that the Astereognosis issue was about as important as I do. ST will still continue.

A big thank you to all my family and friends helping me along this journey. I could not do it without you.