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.