astereognosis - Who Cares?

astereognosis - Stereognosis is the ability to identify objects that are placed in the hand when the eyes are closed. The patient is given common objects and asked to identify them without looking at them. The inability to do this called astereognosis and indicates parietal lobe dysfunction.

This (apart from some work on my fine motor control) is apparently the extent of my problem with my right hand. I frankly don't care. Who reaches into a draw full of knives with looking first? Who keeps their keys in with their comb and doesn't look for them first? I certainly don't and can look now if I have to, or use my left left hand.

I can write, type, cook, ride a horse, knit, tie my shoes laces, run, etc. So this seems a non-issue to me:)

My speech, memory, attention etc. needs work, but hey with a 5 year old girl and an 8 year old boy they did anyway.

If this is the extent of it - yippee!

Last Radiation Appointment - YAY

It was my last radiation appointment yesterday which was a relief. I cannot believe that it has been 30 times. I had a standing ovation from my fellow waiting room friends which was bitter sweet. I also got to hug the rather attractive techs that have I been dealing with and take my mask home:)

I had the meeting with the Dr. after. He said that he though he thinks he are going well ,he reminded me that I will never return to how I was before the surgery. Everything they had to remove would not come back. I know that, but it was hard to be reminded of. I think that I am going to choose ignore him on this one. He then reminded that I have also ignored him on a few things like jogging in the dark. I think that he was joking. When else would I have time to do it?? He wants to hear from me immediately if I feel things are up and then an MRI will be scheduled.

I woke up last night in a panic thinking that I hadn't taken the chemo, then I remembered that it stops the last day before radiation. Maybe the Doc. is right:)

Today is going to be another long day.  The Chemo lady now takes over and that is the first appointment. She will again lower the decadron dose today as she wants me off ASAP. She and will also schedule the MRIs from here. I found out that the high dose a Temador will most likely start after the first MRI in the New Year.

Next my Avastin infusion which is easy. Next Ot and speech therapy ( 2.5 hours back to back) which is hard work but the results are worth it.

Maybe  an hour to relax then we are going to the Holiday Lights at the local train park.

Update Dec. 4th

It has  been a while since my last post. Things have been going well.

I cannnot believe that my last day of the radiation therapy ends this Wednesday. That will be the total of 30 sessions over.

Much as I love the techs there I cannnot wait to see that back of them. The last appointment with the radiation Doc. will be the same day.

Speech and OT continues and I am scheduled through the end of the year. I will extend as long as the insurance company allows. They are alreadly asking questions about the cost of the Avastin whichs seems to be around $15,000 a shot and is not considered "chemo".

The double dose of regular chemo I am assuming starts right away. I will find out Thursday. The MRI will be planned for around the holidays to allow things to "settle down". We will ask for a New Year one.

We have fun family things like the membership night and the Train Lights, Ornament Exchange at the Barn, Polar Express. etc.Karl's birthday (yikes better get shopping - Amazon is my friend )

My Mum leaves Monday and I am seriously considering the passport thing this time around as I am more with it than when Anna left:)

More from Brain Tumor Land later.

Thanks Giving

I am thankful for many things and here are a few:

My family at home, Karl, Astrid, Alexander for their love and care.
My family in England that I miss so much. I Mum is here right now and the pleasure and relief  is immense.
My lovely sister, such a bright light and so funny.
My Dad is also coming soon, and the chance to spend time with him will be good.

I am thankful for my dear friends, their support and belief in me. It means so much.
Also to the network of support that my family and i have received from so many people: the school, the  barn and from too many other sources to count.

All of these things are helping to give me the strength, hope, and courage to fight this.Thank you.

Hair Loss

I expected hair loss around this time. What I did not expect was for my hair to form overnight into tight dreadlocks first. I know is it the loose hair twisting around the remaining but is was an unexpected development:)

Busy Busy

I had a good (?) day of appointments today.

Chemo lady was good and has decided to start the IV Avastin at the early point it the radio therapy which makes 23 November.

We could that done this the 22 but that is Astrid's Thank Giving Play. Cannot skip that:)

The IV will take about 90 mins I think every two weeks. She also gave me an SSRI script. as I find as hard to stop the tears andIcannot do that the children.

Radiotion was as usual except that Karl got to take some photos of me in my fancy mask. The Doc. was actually very nice today to if prove me wrong.
Had a nice lunch with Karl. Dont get to see him much as he is working so much.

Tomorrow I start speach and OT therapy. The eval. yesterday was long and frustrating as I realize have I lost so much.

The speach etc. is most interesting I they will be looking at changes, as well as progress, as a means of spotting growth or changes on the tumor. This part hadn't ocurred to me. Anything to help.

Mum coming tomorrow, that is wonderful.

Scared of the Docs

I sure that this the wrong attitude, but at this point I am scared of the doctors.

I hear nothing but bad news. I am sure that they are trying to not give me false hope, but come on
PLEASE!

This not include the Chemo lady or the surgeon but the radio dr.

The radio tech are wonderful. But soon I hear mention of a the Dr. I start to panic. In fact in last hearing a message the doc. was on his was I literally ran after the radio. They called Karl to ask what up
he just said that I not know.

9 day of radio and chemo together. I am feeling OK.

Beer for Brains

So funny, Karl got to combine his most special things,beer and food, with raising money for our new fundraising thing.

http://thebeerforbrainsfoundation.org/

He even got me a t-shirt:)

love you Karl xx

First round done

1 weeks done of rad. and chemo
6 more to go
two years of the chem

Decadron  up due swelling back up

Still cannot control that what coming is of my mouth.

Dog walking helps.

Sisters

Today my sister goes home. So I am thinking of stealing her passport? That would be not too bad?

treatment appointments

Next few days of treatment planning. Bring it on:)

Wish my sister didn't have to go soon. She is funny, makes me laugh, so hard that bubbles come out of my nose, and gives me hope.,
xxx

almost up to two finger typing:)

better at writing

it is  like starting from pre-school:)
love to my friends XX

I am still excellent

I am writing this blog on Katy's behalf because Katy cannot type yet (Annie - Katy's sister over from the uk)

Had operation last Friday where the excellent surgeon cut out 99% of the grade 4 tumour.  I was home the next day - less tham 24 hours after having the op!!  Karl and I are so grateful to have such wonderful friends who stayed with Karl at the hospital all day.  My speech isn't too great but is improving every day, as are my facial symptoms.  The tumour will remain at grade 4 - that will not change.  But - I will fight like fuck! I have appointments next week to discuss the next stage of my treatment which will be chemo and radiotherapy.  I will also have occupational therapy, physical therapy and speech therapy.  As soon as I can I will be riding again.  In another 5 weeks - don't tell Karl!!

We would like to say a huge thank you to all our friends who have helped in all different ways - we could not do this without you.

I am also over the moon to have my awesome sister with me who has flown over from England to make me laugh.  (Ok, that was Annie writing that but I think my speech therapy methods are working - contact me for more information on this!!)

GBM

Stage 4. Op tomorrow

All gone pear shaped as they say

First of all i need to say a big thank you to a close friend for insisting I follow up on the increase on my symptoms.

Basically they found a thing in the middle of the tumor that was not there 3 weeks ago. Treatment is not starting tomorrow. Have more MRI and wanding stuff, my surgeon gets off a plane 2morrow and may have emergency op.   

Shit. 

To top it off Astrid got taken  to ER with broken finger. No harm done and she loved the attention.:)

At least i got to ride wonderful Charlie today.

Appointments

So I finally got a call back. Tomorrow I go in to make sure everything is in the right place to zap and then start radiation Thursday. Along with chemo at the same time.  Things are moving on.

Disney and frustration ( not at the same time)

Disney was a real treat, the children loved it. It was unusually hot which was a drag but nothing that a swim in the afternoon couldn't fix. We met up with a very good friend of Astrid's for a Princess lunch, it was a complete surprise for both of them was very sweet. Alexander was not impressed.

Now for the frustrating part. I have not heard  back from Barrow about the radiation and have started to have other symptoms. My speech is poor and fine motor control in the right side of my body is deteriorating.

Tonight I was reading Curious George to Astrid and she found it was very funny that that I couldn't say the word "puzzle". You not even want to know mess I made of "Flagstaff:

Big day at the Tumor "Center"

It started out with a MRI at 8am.  I don't think I will ever get used to that 45 minutes. We then grabbed a quick breakfast at a greasy spoon place across the street.  I know that I should be thinking broccoli but it was breakfast:)

Next was the CT scan and fitting of the "Hannibal Lecter mask" , that is also pretty suffocating but at least it was fast. Apparently the putting together of the MRI and CT scan will take about 5 days and then I will be called back in for the initial zapping and scheduling for the future.

We then had a 2.5 hour wait before the chemo appointment.  I wasn't too bad as we found a Starbucks and comfy chairs.

I will have to take 120mg of the Temodar each day at the same time as the radiation (although this includes weekends).  This is half the dosage of the 5/23 schedule so hopefully it will not be so bad!

I really want to start this thing, I am feeling strong and ready to take on this tumor. 

I am incredibly touched by the generosity of the ladies at school. They have set up a website and we will be having beautiful meals MWF for each week of the radiation.  I cannot thank them enough.

Communication Between Radiation and Chemo Departments

I am beginning to wonder if access to the internet has a big effect on prognosis.  I do not just mean reading studies and browsing medical pages, but also "talking" with others going through the same things.

I had a strange feeling that the communication between the neuro-oncologist and radiotion-oncologist was not happening.  This was in spite of both departments telling me that combined therapy was what they recommended. 

So I called neuro-oncology and got through to the nurse there.  She said "you are just down for radiation". It wasn't until I insisted that this was not true and that both departments had advised combined therapy that she agreed to talk with the Dr. and to call me back.

Within 30 minutes she called me back and said "you definitely need to come and see the Dr. before that starts to decide on dosage etc." and gave me an appointment for the same day as my simulation appointment.

This does not inspire me with confidence and makes me feel very sad for those people not so used to the internet, or those used to just trusting that the Drs. are doing the best.  I am sure that there are doctors and centers with better communication, but right now I am furious.

On a good note, the tremendous amount of support both  practical help and love from friends and family near and far is keeping me sane.  Thank you.

Recovering from first chemo round

One down, 11 to go.

I did really well the 5 days that I took the pill, then the next three days I could hardly move.  My appetite was nil which was doubly bad as I have not been able to eat solid food for about a week before due to the seizures.  Only today Thursday (Day 9) have I been able to step up the food.  I need to try to put on about 10lb and keep it that way through the radiaton. I will be more prepared with anti-nausea meds, Miralax, and some people seems to think that exercise helps.  I cannot do the horse show that I wanted to do this weekend, but I will certainly try to ride a couple of times next weeks.

While puking  kept on thinking how I got through it during pregnancy so can do it now:)

I have heard that they might reduce the chemo dosage while doing the radiation.  I hope so. Nobody said that this would easy, but I need to be prepared.

On a good note, I am so lucky to have some wonderful friends helping out with getting the children in and out school. And a husband who will not let me out of sight. Also flowers and chocolates arrived today, which can only be a good thing, especially to help with the weight gain:)

Two more weeks before Disney so I should be doing OK then.

Well it caught up with me

Day 6 (Monday) I had major fatigue and Day 7 I woke up vomiting. It did not occur to me took take one of extra anti-nausea pill that I was given "just in case" until much later in the morning.  I started to feel a lot better very quickly although I have done a lot of sleeping.

I hope that Day 8 is better!

First round of Temodar Chemo over

Last night was that 5th and last tablet for this month.  The good news is that I did not experience any of the nausea and vomiting that is common. I do have really bad constipation (common) though and next month I will follow the advice of a fellow LGG friend and start the prevention rather than cure method. Now I begin the wait before the next round starts.

Days 7-10 are supposed to be when you have the lowest blood counts (white and red blood cells and platelets), this makes you susceptible to illness and you are supposed to avoid situations where you  might catch something.  School are children are the most germ filled creatures known so I am not sure how I am supposed to do that.s


One down 23 to to go

Mindfulness

Several people recently have used phrases like "live in the moment" , "come to terms with your new normal", "be mindful".  


This has never been me. I have always been a multi-tasker kind of person with my mind on the next thing, or even the next several things. I have never been a "mindful" person. 


I am going to try hard though to be that person. I have been recommended the work of Kabat-Zinn which I intending to look into. The problem is that I immediately thought about downloading it to my Droid so that I can read it in spare moments while dashing around multi-tasking. I think I will get his Mindfulness for Beginners first:)

Radiation for Low Grade Glioma

I have made the decision to zap my brain with protons along with the Temodar chemo. 


It is hard that no Doctor knows how to treat this so all decisions are up to you, the inexpert, unexpected patient. Two well respected tumor boards were split 50/50 on whether to defer radiation.  2 surgeons from the boards who are my contacts both recommended delaying.


What helped me come to this decision in the end was that the neuro-oncologist said that said she would give me Temodar but I needed radiation also.  Then the radiation oncologist said that he would do radiation but also the chemo. 


Even if my tumor does not change in grade, if / when it grows that it will cause more damage than the potential risks of radiation.


So, on the 26th September I go in to have MRI, CT scan and a mask molded to fit my face so that they do a model of my brain and also have a means of making sure my brain is in the same place each time that they zap me. They call this process simulation. We then head off for a weekend at Disney Land and when we get back all of the calculations and mapping should be ready for me to start treatment on the 3rd October.


I will have a total of 27 treatments carried out every weekday, meaning my last treatment will be on 8th November.


My good friend has taken the children to a water park and movies today so I am relaxing and digesting all of this.  She also brought me some home made, organic bean and vegetable soup which Karl pureed for me and which I ate with seizure free pleasure.

Days 1 and 2 of first Temodar Chemo Cycle

My baseline blood work all came back good so I was given the go ahead to start the chemo yesterday.  Knowing that is probably not your every day kind of drug I asked my local pharmacy to pre-order which they promised that they would do. However, when we went to pick it up they admitted that they had forgotten to order it and we then had to drive across town in rush hour traffic. This was not a good start given I was already apprehensive about the whole chemo thing.

It was a little anticlimactic when I took the anti-nausea pill then 30  minutes later the chemo pill, then off bed.  I woke as usual this morning with no ill effects which is great.

The big thing at the moment is not being able to eat as every time I try it brings on a seizure.  I am living off meal replacement drinks and is driving me crazy.

I put a call into my neurologist who said that before increasing dosage or changing my anti-seizure medication he needed to check the Lamictal levels in my blood.  In spite of him writing "STAT" on the orders the test results are not "STATable" and so I have to wait.

Please eat a big meal for me tonight:)

Chemo Appointment

First of all I need to say how awesome the neuro-oncologist that we saw this morning is.  She spent around one and a half hours with us, listening to what We knew about what I have and my choices for treatment, which was on entering, chemo alone.

She then gave me a potted history of outcomes since the 80's with this kind of brain tumor. ( Grade II Astrocytoma) She explained to me that up until a few years ago she was completely anti any kind of radiation therapy for this. She told us that she became expert at hiding her patients from the neuro-radiation oncologist. She then said that in her experience more recently and that of doctors around the country and world looking at this type of tumor, that chemo alone does not make for a good outcome.

She confirmed what I already knew, that as this is an infiltrating diffuse tumor in a very sensitive place,surgery is not an option.

She explained that Temodar works best on certain types of tumor (not mine) and for a large percentage of abnormal, fast dividing cells (again not mine).

She told me that where my tumor is, any growth is going to be very damaging, even if it does not develop into a more malignant tumor.  She had the functional MRI images up and showed me where the damage is.

She promised me that I would walk out with a prescription for Temodar, but that I should seriously listen to the radiation-oncologist on Friday as that treatment was more likely to stop the tumor growing and even shrink it. Apparently studies have shown that a lower dose of radiation was found to be just as effective in terms of outcome than higher doses. She told me that whole brain radiation would not be necessary, and that it was not a one shot deal.  In fact they have a patient in this week who had radiation 8 years ago and was coming in for more as his tumor had started to grow again.

If the baseline blood work looks good I will start chemo tomorrow night on a 5 days on, 23 off days regime (Dosage based on body weight 250mg) . Then another blood test and followup appointment with her and hopefully start the next round.  I will have MRIs every 2 months.

So I have my Temodar, but with a new interest in radiation and will be going to the appointment Friday with an open mind.

My neurologist is also great and at my request, over the telephone, increased the dosage of the anti-seizure medication again. He actually called it in to the pharmacy before I even got home. I can still go up further if necessary.

After all of that I went straight to the barn and had a great ride:)

More smaller seizures

So this morning Karl "allowed" me to brush my front teeth (with supervision), with no ill effects.  Later I thought that I would rinse my mouth with mouth wash. I didn't really swoosh much and and certainly did no gargling however I felt a seizure coming on.  It seemed milder so I dialed Karl and walked out to the living room.. I managed to stand up and breathe through it. It was shorter and I knew that I could stop it from progressing to the point I felt I had to lie down.  I drooled and Astrid watching me said "ooh gross Mummy" with a fascinated look on her face.

Karl was angry with me for what he called "sneaking into mouthwash".  I mean come on Karl  it's just mouth wash. I usually take really god care of my teeth with brushing and flossing every day, this is hard for me.

I have been having minor sensations of an impending seizure on and off all day but no others have gone full blown. I Googled and found a lot of sites that say this does not necessarily mean a change in the tumor, and a few others that said the opposite of course.

Come on appointments, I am ready to fight this thing and I want to do it now.

Another Two Seizures Today

**warning long post **

Well this was a shock although I suppose given the circumstances it shouldn't have been.

This morning we were having a slow start to the Labor day weekend which was nice.  Karl was in bed and the children were sitting on the floor playing.  I decided that the day had to begin and was in the bathroom cleaning my teeth and then I felt the seizure start to come on. I could not talk and my face, cheeks and jaw started to spasm.  I tried to get Karl's attention but he was lost in space staring the other way. I started banging on the bathroom counter with no success, in desperation I grabbed one of the heavy candles on the counter and threw it hard in his direction.  His face was a picture:)

Then he realized what was happening and ran over. I got into the recovery position and tried to remain calm and breathe. My mouth was open and I was drooling (TMI) with my jaw and face uncontrollably spasming. Knowing the cause helped my fear level considerably and I was able to focus on breathing and relaxing. The image that I visualized was the back screen with the word "relax" in white that was displayed during my fMRI between trials.  Odd, but it seemed to work.  After a few minutes I came out of it, and my face stopped spasming.

The whole time I was aware of what was going on.  Astrid was stroking my hair and saying "its OK Mummy", Karl was holding my hand and telling me the same thing. The cat came and sat about 2 inches away from my face staring at me purring.  I think that he thought I must have caught a mouse or something.

When we had all calmed down, I spoke to the children about the tumor in my brain that the doctors are looking at and told them that this is called a seizure and will probably happen again. They were momentarily concerned but soon lost interest.

Later on Alexander said that he thought I was choking on my toothbrush as my cheeks were all puffed up.  He said it sometimes happens to him when he puts his toothbrush in his mouth sideways and cannot get it out.  That was not something that I wanted to hear at that point. Eight year old boys are so weird.

All went on as normal although of course Karl and I were very shaken up.   I called my neurologist and as it was a Saturday got through to an answering service.  He got back to me very quickly and told me to double my daily dose of Lamicatal XR.  I was taking 100mg per day and now I have to take 200mg.

My good friend Marci came over and although we talked about it intially, most of the afternoon was filled with laughter.

Later on that afternoon I was cleaning my teeth and it happened again.  Luckily I had my cell phone with me and managed to Karl call who was in another part of the house. I then got myself into the recovery position and waited for him to answer the phone. Of course I cannot speak so put the phone to my mouth hoping he would hear the gurgling, then I banged the phone on the wall. He came running and we went through the same thing again, without the cat this time. This one was not as long and I was out of it much sooner.

These are the first that I have not woken up from a dead sleep seizing so I was completely aware of the onset. Also these are the first since I am of course worried that this might mean some sort of progression or change in the tumor and also what it means for my general day to day life.

Am I never supposed to clean my teeth again???

Hitting the Tickle Spot

It all started with my failed attempt to make Alexander a Lego cake for his birthday party in July.

It was so funny looking and swamp green when I aimed for bright vibrant Lego green. I just could not stop laughing.  The type of uncontrollable giggles I remember getting when sent to the principal's office at school.  Since then the slightest thing sets me off. Karl thinks that it is cute and a way of releasing stress and tension.  I think that the tumor is hitting my tickle spot (is there such a place in the brain?) and I am regressing to little girl giggles.  It could be worse.

Appointments: Chemo vs Radiation vs Combo

I finally have appointments scheduled with the doctors who will be working with me to design a treatment plan.
Neuro-oncologist on the 6th and radiation-oncologist on the 9th.

My surgeon was quick to point out that there is no real scientific data (studies) to support doing either or (or even an initial combination of the two) for cases like mine.  However, he did say that the radiation is more likely to cause more damage  for example memory loss, early dementia etc.  For this reason,and that fact that I am high functioning with no real symptoms, he recommended that I try the chemo route first and keep the radiation "in my back pocket" as you can only do that once.

There is a third person going to be at one of these appointments. She is the coordinator for clinical trials. She will be talking with me about the possibility of participating in a trial that would randomly assign me to either radiation therapy OR chemotherapy. 

My gut tells me the same from all that I have read and heard from other people in a similar situation (well one actually, thank you Ed),and two surgeons recommendations, that I want to start the chemo only first.  This is coupled with the fact that I do not have the extra time required to participate in these types of trials, nor the desire to limit my complementary therapies. It is very unfortunate that they cannot just gather the data from all the treatment outcome information that must be out there and make a statistical analysis of treatment outcomes. Those scientists and their need for scientific data:)

I will choose not to participate and make the initial treatment choice myself. Of course if future scans show new growth etc then I will zap the thing with everything laser beam that they have.

I am not sure whether the appointment with the radiation doctor is for a hard sell for brain zapping treatment (they told me it would last 2 hours), or just a "get to know you for the future" kind of appointment.

I am really eager to get started on this new phase of my journey.

Karl

I found out a couple of days ago that my husband has not yet read my blog.  "I think that I read most of the first post", he said.  I am going to use this opportunity to let him know a few of the many things that I love about him, and also some things that make me laugh. I wonder how long it will be before he sees it.

He always manages to muster a little energy after work for "Daddy Monster".  This involves chasing the children around the house roaring like a monster, catching and tickling or wrestling Astrid and Alexander.

Inspite of me teeling him that life must go on he is reluctant to schedule his own physical at the docs. in case it  clashes with one of appointments that I have't even made yet. Although frankly his memory is worse than mine at this point and he never remembers the things that the doc tells me:)

He is always asking me if I have remembered to take my pils while invariably forgeting his own.

He takes Alexander out after dark and like the brave warriers they are they valiently protect the family by eliminating as many scorpions as they can catch.  This is one of Alexander's favorite things to do.

He prefers chemical baths (jumping in the pool) to an actual shower.

He is trying hard to get fitter as he knows that he will have to step up a bit where running the house, children's activities and business is concerned.  He has been on the running machine twice now I think:)

He holds me when I get scared and then I begin to feel safe again.

He will always make sure that we have planned for the future whatever that may be.

He carries Astrid (5) to bed "like a baby" each night and looks under her bed and in the closet so that she feels safe and loved.

He will microwave those revolting smelling chicken nuggets for Astrid as he knows that the smell makes me want to vomit. (I have a very sensitive nose and a lot of smells make me want to vomit, I hope this does not get worse when I start the chemo)

I love you Karl, the last thirteen years of my life have been the best ever. We have built a wonderful life together and acheived so much, long may it continue.

Children and Nightmares

Maybe I am giving this more thought than it needs but both children are having nightmares on a regular basis. Astrid has them most nights and they break my heart.  They are often about the family getting attacked by a variety of monsters. She has wings so can fly away.  Once she told me that she ripped off one of her wings to give to me so that I could escape too.  It did not stick so I still couldn't escape. It took all of my strength not to break down and cry with her. I told her to keep her wings and escape.

Alexander has also been having the same type of dreams of monsters attacking the family.

Maybe this is normal for this age group but I cannot help thinking  that they are worried about me. I think that at some stage in the future we will have to consider counseling, but I don't want to give this tumor more visibility in their lives than it deserves right now. They have no idea (I think), how serious this is.

BBC Investigative Journalism on stalled Brain Tumor Research

http://www.bbc.co.uk/programmes/b013xsm1 
"Treating Tumours: Old Drug, New Tricks"

The BBC Radio 4 on chlorimipramine is now available as a pod cast (thanks Mum). The use of this drug seems a very long way off, but anecdotal and lab work seems promising.

On weight loss

For the record, I have lost approximately 30lb since February.  This has been due to hard work and strength of will  after the LPR diagnosis.  This coupled with a large dose of fear about waking up choking made my "no eating or drinking after 7pm" diet a success. The weight loss is not due to the Tumor (not sure why it deserves capitalization, I think the next reference will diminish it with a lower case t.).  This is my ideal weight and still a little over my pre-children weight when I was skinny.

That is not to say that once I start the chemo that my weight will not drop.  If it does you can blame the tumor then and bring on the cookies:) 

But currently, I deserve the credit, NOT the tumor:)

My Perspective on the Tumor

It will not beat me.  Thanks to the early diagnosis of LPR in March 2011 (silent reflux) I am lean and fit and strong.  I ride horses hard 3 or 4 times a week, take vitamins, drink no alcohol, eat little junk and try to eat healthy food. Mostly, although I do have a gummi bear habit (again not a secret "My Mummy is going to get really sugared up if she eats all of those"). I have a lot to live  for.  I love my two children and husband fiercely. I have an amazing circle of friends who will help me through this. Maybe I am wrong but I view this a a phase in my life that I will work through and come out of the other end. It does disturb me that nothing really has changed prognosis wise for brain tumor patients in the last 40 something years. But I am hopeful that this will change. The hard part at the moment is that as well as never physically leaving my head, it inhabits my thoughts constantly. The only time that I don't think think about it is when I am riding a horse.  All my thoughts, feelings, body and soul have to be focused on the horse.  It is incredible therapy.

Aug 22nd - Reality

I have had no nocturnal seizures since June 5th.  I feel great, fit and strong. No other symptoms. How can I possibly have a brain tumor? Reality hits again when I have a phone call from the neuro-oncologist office to schedule an appointment. I know that I have to start this right away but I feel so good right now and I have a feeling that will stop pretty quickly once I start on the Temador.

Aug 21st: - chlorimipramine?

Email from my Mum in England about a program airing on radio 4.  It is basically an investigative journalist piece about why am old drug (chlomipramine) that has been proven to be beneficial in shrinking / and or stopping glioma progression is not being used due to lack of funding for clinical trials. I will have to follow this closely.  In Karl's words "patent expiration".

August 19-21 - Romance Weekend

An incredible thoughtful and special gift from our San Diego beach holiday friends.  They insisted on adding our two children to their three and looking after them all weekend while Karl and I have a weekend to regroup and connect.  We decided to go back to Enchantment Resort in Sedona the place where we had a "romance weekend" in 1998 when we were first dating.  The weekend was lovely.  Friday evening we had fantastic electrical storms plus beautiful rainbows over the red rocks while we had dinner. Saturday we just lazed around the spa pool. Karl had a massage and I had a facial.  Oddly there was a group of friends there that Karl got talking to also having a weekend of relaxation before one of the group started chemo. I loved the weekend although missed my two sweet children. They of course wanted to know when they could do it again, they had so much fun.

My husband's perspective

"I don't even know how to make "Mummy Mac and Cheese" This is our son's all time favorite meal. "Tell me everything you do at work now before your biopsy".  We have a very strong partnership both at work and personally, but well differentiated in terms of who does what.  I have been the one to leave work early and do the homework, play dates etc. While Karl is a slave to code and nurturing the eye tracker, and will miss meals if I don't call. I don't blame him for panicking right now.

Tumor Perspective from the children

Of course being 8 and 5, the children know something is up with Mummy but to them I am invincible. I explained to them that the doctor took pictures of my brain (which I showed them), and found something that should not be there which he needed to take out and look at to see what it is. Of course they wanted to know how he did it. I showed them the stitch ("cool"), and the hole with bruise ("wow how did they bolt your head to the table?").  Being the engineer that he is destined to be my 8 year old son wanted to know how they got my brain out from such a small hole.  I told him they sucked it  out with a needle. He then looked concerned and asked if they put it back in.  When I said no, he thought for a moment and asked what they did with it. "Is the doctor a zombie?  Did he eat it?".  I said that I was pretty sure that he was not a zombie doctor and that he did not eat it.  That seemed to satisfy him. Too much Scooby Doo I think.Of course nothing is a secret to them so the cub house lady at the local grocery store knows all about it, Astrid wanted me to tell all of her friends about "what happened to  your brain Mummy".  This is when I realized that it would probably be easier to tell people rather than not. 

August 18th - Well Differentiated Astrocytoma. WHO Grade II

August 18th
Appointment with neurosurgeon to hear the diagnosis from the biopsy. Well differentiated astrocytoma. WHO Grade II. Not operable. Start chemo now and save radiation for later. There is a lot of debate over whether to start radiation immediately with the chemo or to delay it for when (not if) it progresses.  I have had two tumor boards review my stuff and both came up with the same indecision. Not sure if that  makes be feel better or not. Of course Karl wanted to know worst case for that the doc had seen with somebody in my condition.  The answer was grim.. Progression in 6  months and dead in 12 months.  He then went on to tell me of 17 and 22 year survivors.

Aug 8th - Needle Biopsy

Dropped off the children at a good friends so that we could check in at the hospital 7am.  Surgery planned for 9:30, delayed an hour and got in at 10:30. The resident came in to test my neurological responses prior to surgery. After asking me to follow his finger with my eyes, etc. then he said pull his hands and I heard my horse trainer's voice telling me to pull back with both hands. When he says that he means to pull hard.  I pulled the resident on top of me on the bed. His face was a picture. I still giggle now when I think about that. The anesthesiologist couldnt help pulling a face when I mentioned laryngospams.  Quick visit from neurosurgeon and then off we went.

And then I woke up with the nurse talking nicely to me and wiping the blood of my face before she got my husband and good friend in.  The blood was not from the actual biopsy incision, but from "where they bolted my head to the frame". I felt fine except my throat hurt like hell. The nurse asked me if I wanted to go home and I said YES!! The incision from the biopsy hardly deserves the title incision. It is so small with one tiny little stitch and no hair cut or shaved. I literally have to look hard to find it. Great surgeon. I asked for water and drank it too quickly so then felt sick.  Got the zofran and started to feel better.

While Karl went to get the car (he misses all the good bits) the neurosurgeon came in and said that all went well.  Initial pathology showed low grade glioma.  Not operable as it had already spread and was in a too sensitive spot. Chemo was the next step.I asked him prognosis (not sure why I did that as I was half out of it from the anesthetic). 

He said "Good. Not excellent." I asked him "Why not excellent?"  He said "Because you have a brain tumor".

Aug 5th - Functional MRI and Pre-Op Testing

Friday 5th August
Pre-op blood work etc.  Passed with flying colors.  Of course. Then spent almost 2 hours in the magnet. The first part was the functional MRI. Not too bad and karl got to sit with the doc and watch parts of my brain light up as I went through the tests. He thought that was pretty cool. Then without being allowed out of that loud tube I had the anatomical part of the MRI with and without contrast. Almost two hours in all. Crazy. The good thing about it though is that they couldn't remove the fancy display goggles that I was looking at for the functional MRI so I got to look at a slide show of pretty landscapes.  Much better than the inside if the magnet.

July 11th - Repeat MRI

July 18th
I had a repeat MRI scheduled for July 11th and follow up with the neurologist on the 18th. Karl could not come with me that day. I fully believed that I would be sent to the MS specialist and would start MS treatment. I was not afraid of this, it seemed that treatments for MS had progressed so much that I could manage it and not become too effected by it until maybe in old age.

That was not how the appointment went. My neurologist was amazing.  He had read the report from the radiologist and found it to be wishy-washy and just follow-uppy that he met with the radiologist and went over some of my history. The addendum to the MRI that they wrote together and that he read to me said that there were changes to the lesions and that "they" were looking less like MS and more like a tumor. These words washed over me and I really felt no emotion as he referred me to a neuro-surgeon at Barrows for a consult. He increased clonazepam to 1mg per night and gave me a trial pack of Lamictal XR to control what are now described as nocturnal seizures.

26th July
Met with neurosurgeon today and he went through scans etc.  He tells me that I have a primary glioma in the speach / throat area of the brain. (brain tumor). The area is too large to remove surgically without damaging me more so surgery will be a last resort.Next week I will have a functional MRI which is where they look at my brain while I am doing things like swallowing, wiggling my fingers, thinking etc so that they can tell if the tumor is actually in the speach / throat area or next to it causing pressure. i.e. what areas to avoid when they suck out the tissue for biopsy.

After that I have a brain biopsy to determine what type of tumor it is and if it would respond to chemotherapy. How rapidly it is growing etc. Will continue anti seizure medication to hopefully control the seizures.

I walked out of his office with tears running down my face.  They did not stop until we picked up the children.

The good news is it appears to be slow growing. I am trying to remain positive for Karl and the children but right now I am in shock. Will know more information about prognosis after the biopsy.

Cannot stop thinking and googling.  All of the questions that that I should have asked of course I did not. Will my head be shaved? Will I die this year? The only question I asked was "If this is somehow related to chromosomes, is it genetic and will my children get it?"It all hit me suddenly one afternoon this week and I started to cry uncontrollably.  I have heard the expression "keening sound of grief" but never really knew what it sounded like. I know now. I cried not for me but for my two young children. Too young to lose their Mummy.  I do not want to die.

Feb - June 2011 History leading up to diagnosis

2011
Feb 6th:
When I went to bed I knew that I had drank a few too many glasses of wine and would suffer in the morning.  Not sure why I did it especially as it was a Sunday and I had work and school to think of.  I didn't think, just drank. Not sure exactly what time it happened by I woke suddenly with a huge cramp in my leg and what I thought at the time as my tongue stuck down the back of my throat choking me.  I got out of bed unable to breathe and starting  hitting myself on the back to get my tongue out.  I have no idea how long I did this for until the black closed in on me.  It was literally as if dark was closing in on me to a point.  As it happened I thought, this is it.  I am dying.

Some time later, again I have no idea of the time that passed, I came to and went back to bed.  Too scared to sleep I sat up. Being an avid googler even then, I read up about people having too much to drink, falling asleep on their back and choking on their tongue. I vowed never to drink again and thought not much more about it.  The next few nights were pretty uncomfortable as I tried to sleep with my tongue sticking out.

I have never been so scared.  I really though that I was dying as everything faded to black.

March 10th
It happened again.  No alcohol. This time the sensation was more as if my throat was literally locking shut. How could this happen? Googled more stuff, read about sleep apnea etc. I then spoke with a good friend and she suggested going to an ENT and recommended one. Very nice Doc.  I described my symptoms to him and he listened  and then told me that he didn't believe it was sleep apnea (cannot believe now the relief I felt to hear that).  He looked in the back of my throat and said he saw that my larynx looked as if somebody had poured battery acid on it.  It was so red and my lingual tonsils were inflamed.  Diagnosis: LPR causing laryngospasm as the acid splashed against my larynx. The evidence was there.  Started regimen of PPIs and no eating after 7pm, I was happy to have found a solution so easily and quickly.

April 17th
It happened again.  Really scared.  So scared in fact that I asked my husband Karl to take me to the hospital in the middle of the night.  The bad thing is that Karl and I have always been on different schedules as far as sleep goes.  I am an early to bed early to rise and he is exactly the  opposite.  At this point he had never seen this happen but could tell I was really scared, so he was worried and we bundled the children in the car went to the local hospital.

We parked outside the ER entrance and the security guard watched the sleeping children while a wheel chair was found.  I told Karl to go home and put the children back to bed. ENT told them to admit me for which I was so grateful.  I was so scared and felt that being in the hospital was going to keep me safe.  I was transferred to a larger hospital and admitted to the cardiac ward. Strapped up to heart monitors, oxygen etc. Given steroids to reduce inflammation and IV antibiotics. I had done everything the doc advised, my throat had cleared up. Why was this still happening? The ENT doctor was also concerned and  ordered MRI of brain and throat, plus barium swallow. The next day he told me that their were "small white matter lesions" found on the MRI images of my brain and he was referring me to a neurologist. Didn't have a clue what that meant. The neurologist then ordered a series of other tests including a spinal tap. Nothing came up in the spinal tap and other blood work.  By this time I had spent 4 nights in the hospital and the neurologist said other tests such as EEGs and sleep studies should be done as an out patient.

Passed EEG day time test, plus night time EEG and full sleep study with flying colors. Nobody really knew what to do with me.  Could be multiple sclerosis but this was not really a symptom of MS.  Was advised to continue PPIs etc, given .5mg of clonazepam to help me sleep as the fear was getting high by this point. Arranged follow up MRI for July, 3 months away.

June 5th

It happened again.  We were on vacation in beautiful San Diego with good friends.  Had spent a beautiful relaxing day on the beach watching the children enjoy their friends and the freedom of a quiet Mission Beach in early June.  It was a magical day.  Then I woke up again with my larynx closed shut unable to breathe.  Luckily this time Karl was sleeping next to me and I managed to wake him somehow.  Obviously with my larynx slammed shut I cannot call out so it involved punching his arm or something.  This time Karl shared the experience.  He could see my fear and that I could not breathe.  He held me in his arms trying to keep me awake but of course it all faded to black. He called 911 and dashed to the beach house next door to wake our friends. Our children were in safe hands as Karl rode in the front of the ambulance. The staff were nice but couldn't see what to do with me so I was discharged the next afternoon.  The beach vacation continued as normal for the children but for Karl and I it was tinged with fear. He later said that he thought I was dying in his arms.


June and July ish: went down some rabbit holes with endoscopy and talk of fundoplication surgery but my gut (ha ha) told me that this was not it.