I just reread my last short post. Wow that was only about a month ago and here I am in a whole other dimension. A completely different place to that one.
After the PET and the MRI I had thought that there was an easy to fix thing coming. A cancer may be that some surgery could remove it was too bad or an easy fix.
Well they couldnt biopsy my leg. The lesion was not found on Ultrasound. So we went to have blood work done and my whole world started to unravel.

This was one of the first blood tests I had done and it shows ok levels. The smear at the top left side is a bone marrow smear. Painful but needed.

So what was the upshot of this all? I have Leukemia. This Dr who did the first bone marrow told me it looked like ALL (Acute Lymphoblastic Leukemia) The journey continues.
 Love and hugs
Tanya

Saturday 13 th

Well we picked up my new MRI yesterday. It was one with contrast and shows a lovely black patch that has been labelled an artifact. Ok no mass or lump but it doesnt rule out something in there completely. I am still pushing for a diagnosis.
Today we went back to the hospital where I had the PET CT and saw a neurologist I had seen at another hospital a few years ago. After a long chat he has referred me to his mate at another hospital for a Monday appointment and ...... a biopsy of my leg. YAY!!!!! maybe now I can get a diagnosis and move forward.
Love and hugs to all
Tanya

Sat and waited for 4 hours to see the lady Oncologist. She has lovely English even though she didnt want to speak it.
So I now have a request for blood tests and a request for a new MRI with contrast for my head which will be done tomorrow and then I will go to the National Cancer Institute and camp out until I get a diagnosis. No one wants to tell me anything much and tests here are limited. I cant even really just jump on a plane and fly back to Australia now because my blood results were bad and it is way too risky.
So that brings up the next point.
Right now it looks like I am going to die.
Holy Moly Tanya you cant write that...You cant even say that.... Why not? What is so very wrong with actually facing a truth as it stands.
I wasnt taught how to live in the sense of being happy and whole. I was taught how to fight to go forward and I was taught to be competitive and to win at all costs. Well guess what? It is not making me happy. I dont think it really makes anyone happy.
So what makes me happy right now? patting my rabbit, sleeping, reading a book, spending time with my friends and making pretties.
That is happy. If I have to learn to die then that lesson will be learnt as well. Not a problem.
Love and hugs
Tanya

I went on Mondayto see the Dr. NO TNF in Thailand. Thais dont get melanoma.
Ok I went to another hospital today to see a Dr who's hospital treats the disease of Melanoma. NO TNF. They diagnose by biopsy. Seeing the next Dr later today to sort that.
Blood work.... OMG how low can a white cell count go. Platelets are mid range low and Red cells are low too. This is NOT a pretty pic. Bone marrow involvement was the reason.
So no one will confirm a cancer but they will now tell me the marrow is affected. I love the way things work here. (sarcasm dripping heavily)
I came home and sobbed hysterically, Well after all wouldn't you?
Going to rest now.will let you know what comes next as it unfolds.
Love and Hugs
Tanya

This was taken on 30th Sept.
In this pic you can see my walking stick and if you look closely on the seat is a large envelope.
The stick is because I am no longer balanced and cannot walk without falling often.

Why now? Why post now? In that envelope is my PET CT scan that I had done the week before. Because of the love and care from a wonderful group of friends I was finally able to afford to have pics taken that have given really good indicators of what is wrong. Why I am in pain, why I have a headache. Yes a LOT more questions but also many answers.

So a little background. I havent posted in a long time because I kind of gave up looking for answers. Got told often enough that it was all in my imagination and that I needed to just suck it up and get on with it. Well I did. I went back to work for a bit until it got too hard to do. Gave it up and tried again and again. Tried herbs and coconut oil and was feeling less crap so went back to work AGAIN. That one lasted two weeks really even though I am still tidying up the last strings there. I started to sell online again only to come up against a wall that has been thrown up out there.(will talk more about that later)

So fast forward to a week ago. Hey Tanya you are so fat, and you dont look sick. Well strangely enough I have dropped 20+ pounds in the last three months with no diet and no exercise (Yes I was REALLY fat before) so this level of fat right now is ok for me. You dont look sick. No, I am smiling and you cant see the black rings under my eyes.

The young man in the pic is a friend off FB who came to visit in Bangkok and we have spent some time sort of socialising. I am taking him shopping on Tuesday if I can.

So I know you are waiting....Impatiently, if you are like I was. What does the scan show Tanya ?
This scan is done by injecting radio active glucose in the blood and allowing the cells to uptake the glucose. This leaves the tracer in place. So where does it show up?  Areas of high metabolic activity. Cancer, inflammation, tissue damage. Places were the cells are taking up a LOT of energy are the concentrated spots.

I have three shiny spots. The first one in my lower left leg is only small at 0.8cm (small LOL )the next biggest one is on the stomach. It is at least 4 times the brightness which means that is may be up to 4 times the size or more. The biggest spot is on the uterus and that is bigger than either of the other two spots.

The brain is not discussed which is interesting because it is also glowing. I need to sort an MRI for this now. I also am sorting blood tests to verify what is going on. The report says neoplasm/malignancy in all three areas.

So I sat. I was stunned. I expected the leg, the rest was like a smack in the guts.

NEXT.... ok so after talking to the Dr he wants me to spend another 100,000 baht or so (the scan was 70,000 and the Drs bills added up to 2750 baht for two consults) to see three other specialists to have ultrasounds, biposies , a endoscopy. No mention of blood tests to check the simple stuff. No mention of seeing an Oncologist to co-ordinate all this. It is a money making exercise.
I thanked him kindly and sorted to go to the Government teaching hospital.
I have a 6pm appointment today (Monday 8th)  to get my blood work started and to get my MRI referral. I had to fight my way through a whole bunch of bureaucratic stuff to be able to even get an appointment but it is underway now. Thank God for my dear partner who held my hand and kept me from crying while I battled with systems not designed to work in a straight forward manner. Even having to wait to see a Dr....You would think that this would be a simple task .Go the the hospital and get checked. Well it seems not. The Drs on duty refused to see me when they had a look at my scan pics. I get the privilege of seeing the Head specialist now LOL.
So the train is moving forward. To where ? No idea. If it is Melanoma like it it looks I am not sure how long this train will continue to run but for now I am enjoying EACH and EVERY moment.
I will keep you posted.
For now I am ok.
I will keep you posted.
Love and hugs
Tanya

Spike was my Christmas present last Christmas.I chose him to come home with me because I have so missed having a pet as I was not allowed a cat or dog in my room a rabbit was the next best buddy.
Well he was so much fun and within a few days was following me like a puppy.
After about 2 weeks Spike showed signs of wasting.He ate and ate all the time and drank normally but he didnt grow and was getting thinner.
One morning I woke to find Spike floppy.I got him out of his cage and he made motions to eat but then lay down and was "floppy" even more.
After a few minutes he convulsed and within 20 minutes my little friend died.
I cried for two days.
What did Spike teach me?
No matter how long you are here you can still bring joy into someone's life. He taught me that love and care are important no matter how long or short your life is and he taught me to enjoy the small stuff.
Since Spike left I have had Ben and Max, both of whom are gone away. Ben died of the same stomach thing as Spike had.They were litter mates (brothers I am lead to believe) and so had the same genetic thing. Max is an English Angora and as he has fur that is very very long I wasnt going to have my other rabbits eating his fur and getting fur balls.Max went to a breeder where is getting the royal treatment and is loved no end.Apparently he is going to be a daddy soon which is more than I was going to let him be LOL.
We now have Mini Rex's and they are so very cute.
So what has this got to do with my head? Well the babies have given me a lot of pleasure and joy and are quite happy for me to sit and pat them and to get my daily dose of Blood Pressure reducing patting time.They also bring a lot of smiles because they do such funny things.
Just because there is pain doesnt mean all Joy has to disappear and there as simple ways that it can be brought back again.
Thank you Spike.
Love and Hugs to all
Tanya

Its been a While

In fact it has been so long the whole format of my blog site has changed and I have no idea what I am doing here anymore.

I will have to relearn it as I go. Just a small some thing I made last year.I wanted to share something pretty first.
So what has been going on?
Well I have finally found what seems to be the reason for my headache.I have an alpha1 antitrypsin deficiency.It is a genetic liver disease and there is no cure.
It seems that as the liver has deteriorated it irritates the astrocytes in the brain (these are special cells in the brain that look like little stars under the microscope and that is how they got their name) and so they leak.The resulting edema is what causes the increased pressure in my head.Not an over production of CSF as I have been being told for years now and not a malfunction of the brain to absorb the fluid. This misdiagnosis happened because they have ALL told me that the increase protein in the CSF when they did spinal taps was "insignificant" and "not important". Heck why have a normal range then if this is not an important factor.
So now I have choices and I am not shadow boxing anymore and I have an understanding of a prognosis.I am not sure I like it but at least it is better than having no idea nor anyway to look after myself because I dont know they underlying cause.
More tomorrow.
Got to rest a little more now.
Love and Hugs
Tanya