3 Too Many

This is a blog to keep you up to date about the going ons with my battle against my 3 unwanted guests in my brain.

I think that I should probably give you a bit of a timeline as to how fast things have been happening around this all:-

I went to Dunedin at the beginning of March for the standard Botox migraine treatment.  That night I had a headache which is not uncommon (though I had been having them constantly for the past 3-5 weeks – again not out of the ordinary for me, after all it is me and you may have gathered I’m nothing but text-book). It ended in a complete meltdown migraine (vomiting) but was fine in the morning, though thought I was slurring my words & hadn’t been with the students all night – so not normal.  Went to Botox clinic where Neuro and I discussed things he decided that even though not related he may try a bit more in a slightly different area of the left temple/ear area (I get about 6 times the amount of Botox they give for cosmetic surgery).  All good, drove home once cleared too, but didn’t quite feel right.

March 10 – 11 – noticed slurring and face drooping a bit on the left side, so thinking the Botox has hit something on the left side where it was placed.

March 12 – 14 – Sue & work colleagues noticed that droop and speech getting worse explained maybe by Botox but decided doc visit needed.  Saw Doctor who was concerned it may be a stroke or TIA so called my Neuro in Dunedin (who is out of country til 26 March).  Told to order urgent CT scan anyway as 90% sure not Botox.

March 15 – called at 3:10 told to be in for CT at 3:45 – Take 2 scans which seemed odd – 1 with contrast as they wanted to be sure they could see everything – is what I think they were politely saying we can almost see something – my brain maybe – haha! Told they have found 1 definite and maybe another smaller mass similar to an abscess on right side of the brain (great they found that too).  In a way this was pleasing as it meant that it wasn’t Botox related (and a wait of several weeks for it to wear off), but it was something conclusive to work on (hope this makes sense in a strange way).  So I’m off to hospital for and urgent MRI.  Overnight I stay in the fab Ward 28.

March 16 – first on MRI list in morning – do get concerns when 5 people are looking at the screen, including 2 surgeons.  No comments when released except that a specialist will report the findings to me later.  Late Friday surgeon comes to discuss the findings – we have gone from one large and a small mass to  1 x 3cm and 2 x 1.2cm masses unknown type, not joined and the only positive they could give was that they are fairly certain they are not tumors.  Only way to find out what they are is to biopsy – meaning they need to drill a hole in my head.  Thankfully 1 is close to the skull so not too invasive. They were trying to get me in for Mon/Tues surgery.  Discussion done about going home for weekend and then finally set free!

March 17-21 – Try to go ahead as normal – put on drugs.  Surgery confirmed as first thing Thursday morning so check in Thurs at 7:30am.

March 22 -28  – Surgery done – all good – 5 days in hospital told no answers probably until Monday.  Monday comes told probably nothing until Thursday so will get them when I get the rocking new 8 stitches out of my head – should I be concerned the surgeon said he would put in 2 and I get 8??  Won’t hold maths against him I guess!

March 29 – Staples out – ouch!!!  No answers now told to expect no news til Monday probably.

March 30 – hassle doctors about getting results told at 4:30 to be at hospital by 5pm for meeting with surgeon to go over biopsy. 5:32 – Told the results have come back with a very rare (50 cases worldwide per year reported) & aggressive form of Brain Cancer & that is what the 3 masees are (remember earlier they said they thought they weren’t tumors).  They are not operable due to location & they will be terminal.  I will be getting Radiation & Chemo therapy to try to extend life & give some quality that’s all.  They grade the tumors from 1-4 based on size & aggressiveness  and tell me that the big one is already about a 3-3.5 on the scale!  They have not given a life expectancy.  As for how long they have been growing they think 2-3 months approximately.

April 5 – We received notice of my first oncology appt for Friday 13 April at 8:30am

April 10 – Received notice of my second oncology appt with Radiation specialist for Wed 18 April at 10:45.

April 13 – Chemo Specialist appointment – goes well delivered the treatment plan pending meeting with the Radiation Specialist on Wednesday 18 April.  Plan is Radiation treatment  of 30 doses 5 days per week for 6 weeks. Chemo treatment for 6 weeks at the same time but for 42 days 7 days per week for 6 weeks. Then a 1 month break  to stabilise & take readings, then start on another 6 months of continuous Chemo.  Even the Doc said it is a very intense & aggressive plan but has to be. 

April 19 – Appointment with Physio about random left arm & leg – 2 pm

April 20 – Appointment with Radiation Preparation team for – mask, scans & alignment marks.

May 7 – First Radiation treatment Appt is for 10:50am.  Chemo will start the same day.

May 24 – mid-point Appointment with the Chemo Specialist.

June 15 – Last Day of Radiation treatment.

June 17 – Last day of first Chemo treatment in conjunction with Radiation.

June 23 – Admitted overnight to ChCh Hospital Ward 27 via ED with serve head pains.

July 9 – Appointment with Chemo specialist pre start of 2nd round of Chemo only treatment. Next course is 2 1/2 times stronger than the first round.

July 13-17 – Chemo only treatment, round 1.

July 21 – Admitted again overnight to ChCh Hospital Ward 27 via ED with serve head pains.

July 25 – Appointment with Neurosurgeon.

Aug 10-14 – Chemo only treatment, round 2

Sept 10-14 – Chemo only treatment, round 3

Oct 8-12 – Chemo only treatment, round 4

Nov 5-9 – Chemo only treatment, round 5

Dec 3-7 – Chemo only treatment, round  6 – Last treatment.

Then who knows what!