Wednesday, November 28, 2012

Grief and Guilt.
Wow she is going to tackle these huge subjects in one go.!!!!!
Well I am going to give you my spin on them in a way that makes sense to me.

Just to give you something to have as a cuddly to hold onto while we take this ride here is a pic of a couple  of my babies. One was called Ben (as in Ben and Jerry) after the ice cream guys cause he looks so much like chocolate chips ice cream and the other was called Houdini after narrowly escaping the jaws of the Cat when he got out of the pen he was in.

Ben and Houdini

Ok so now we have a cuddly lets get down to brass tacks as they say.

Grief.... goodness most of us have experienced this at one time or another and we know that you go through stages which are clearly defined in the literature even if they are not so clear when we are in the middle of it all. Having guide of definitions that at our fingertips should make the whole process easier. Well that is all good in theory but reality says it doesnt work that way.
I have had time to do a lot of thinking of late. Heck when you cant go to work and even a short walk up and down the stairs to the bathroom knocks you sideways and a shower takes hours to recover from there is not much else to do. Maybe some FB surfing or reading but even that has its limits. 
So I have spent time musing over memories and life events and have come to the conclusion that how we pass through our grief stages is directly related to how much guilt we are carrying about the relationship we are referring to.
Example. My baby bunny Spike. My first ever bunny, was a gift last Christmas, and I was so so happy to have him. He died not three weeks later as he had starved to death due to having gut issues that he was born with. I cried for two days but it was a clean sort of teary eyed time with lots of fun memories of his playing and being petted. Comparing that to the death of my younger brother and they are no where near each other in how I dealt with them.
The relationship I had with my brother was not as close as I would have liked and the circumstances of his passing were also less than ideal. As a result I am still processing grief associated with that some 19 years or more later.
This is the tricky part. How do you even begin to consider processing grief with a person who has yet to pass and you know they are going to if circumstances dont change dramatically? How do you allow someone who you love and care for, and that may be because you are siblings or cousins or people you grew up with and spent time with, to make their own choices without pushing them to accept what you have to offer? Yes, what you are offering may be a better choice in the scheme of things, but how do you reconcile the guilt of your relationship with them to allow the respect of making the difficult choices without being backed into a corner? Shoved between a rock and a hard place by your offerings?  EVEN if your offer means possible chance at survival for the one you love? 

Hard stuff, difficult calls and very very intense feelings come up. Especially when we use our previous experiences as a back drop and start to allow guilt and grief from other relationships to intrude. 
I am thinking this is something we have all done. It is my understanding that humans as part of their nature use those previous experiences to guide us with the choices and offerings we now give others around us. 
Lets take a quick break ......
Karter Cat, another of my fur babies you may or may not have met.

Ok so now you have another furry cuddle lets continue.

Right now I am making choices that seem at odds with what others would choose to do. My baggage has nearly killed me twice in just the last two weeks. I'll explain as quickly as possible. I was told for all my childhood years that I was a hypochondriac every time I was ill. Unless it was something you could actually see on the outside (and sometimes even then I was making it up), I was told I was making it up for attention. Fast forward to now. I have a diagnosis. AML. Nasty, aggressive and not giving up. Last week I left it a few extra days to get the hospital to have my counts done. I couldnt see anything on the outside. "But you dont look sick" ringing in my ears (even though last week I had panda eyes and looked like I have been 15 rounds in the boxing ring with bruises all over my arms and legs ). I went on schedule to see the Haematologist instead of a few days earlier as I probably should have. My counts were Platelets 24,000, WBC, 1.1 (not so bad in the scheme of things really) and RBC were 2.2. (ok really). At 20,000 count for platelets you bleed spontaneously. The counts I had done only 8 days before were are 35,000 (oh for the good old days)  and so I didnt expect them to be so bad so fast. 
So I had platelets and blood. I have an appointment for 3rd Dec to go back. 

Fast forward to yesterday. Well yesterday I actually looked more well than in a long time. Mind you I had slept the best past of 6 days so that is not hard to do when you are "rested". Bruises had begun to appear on my legs, arms and body, all by themselves. I am still listening to those kind people who told me..."you are attention seeking, you are making this up, you are a liar." 
At lunch time the Embassy guy rang me. He has been following my case because its part of his job, but also because the Australian government (whilst they cant do much) will keep in touch so my family can be informed if I cant inform them. His words were..."Tanya, go the hospital."
I went. After battling with the staff (again ,and this battle is  old and painful in itself, we will revisit this topic another day when I have energy) I was finally able to see my specialist who got blood work started. 5 hours after I arrived at the hospital I got my results. My, "your problem is not urgent", blood work showed  critical platelet counts of 22,000, critical WBC counts of 0.62 and a Red cell count of 2.6 (surprisingly good LOL) .Now for the blood bank. 
It took til 6am this morning to have everything completed so I could go home. Almost 18 hours.

This long winded story kind of explains my own grieving process and the guilt attached to it all. If I had had a better relationship with my family I am thinking that my grief process would proceed much more smoothly and I wouldnt be doing stupid stuff, like not acting on what is obvious and noticeable to those who are not emotionally attached to the events that are unfolding in my body and my life. I would be treating myself better and looking after basics. Taking care of my health in smaller ways rather than leaving it til the last minute.
Today I have some energy. Today, I once again thank those who gave me a part of themselves (whole blood and platelets) so I can live a little longer. Today I am able to work out this stuff and let it go. Please do not shelve your own shard baggage until a crisis makes you take it down and examine it. Please take some moments each day and look as objectively as you can about why you do the things you do to yourself and others and please, discard those actions that no longer serve you. Its not easy but it is less easy when you are intimately being faced down with it all. 
Thank you for letting me share.
I'll work out the next bit when I am able.
Love and hugs to all
Tanya xxxxxxx

Thursday, November 15, 2012

I was hoping to post this topic yesterday but I was so not feeling well. Today is a better day.

Graduation March 2003

Lets talk.
Many years ago (In a whole other lifetime ago it seems now) I used to work in a hospital, three different ones actually. I am a Medical Scientist. My job in the lab had many facets and I used to not only work in the labs but I worked on the wards and in the operating theatre at times as well. I collected specimens of blood, bone marrow, urine, skin just to name a few. Testing was done, diagnoses were given back to the Drs to share with patients.

I worked with people who got well, with people who would recover but be disfigured for life with their injuries, with people who still looked the same on the outside but were changed so very much on the inside and I worked with people who didnt go home again.
I had the privilege and honour to share final moments with some and I know that I made a difference.

So what has this got to do with chemo?

Back when I worked on the cancer wards I was able to witness first hand the effects of the whole treatment regime. I saw patients as they had their IV's run, held bowls for them to vomit into while the side effects took hold, had to spend extra time to feel for veins that would yield up a small blood sample so we could check counts, watched as people lost their hair, body mass and themselves. I swore I would not ever join those ranks. NO MATTER WHAT.

On one occasion I went to collect a blood specimen from a young lady whose IV was supposed to be running. When I got to her bed she had dislodged the IV from her arm and the chemicals were flowing freely onto her bedding. They had eaten through the sheets, through the vinyl mattress, through the rubber filling, out the other side, made their way past the metal frame of the bed to the floor where they were now pooling and eating a hole in the vinyl floor tiles. That was what was going into this persons body. On other occasions I saw medication bottles labeled..."do not touch the tablets with your fingers. Pour into the cap before swallowing to avoid burns". This is how caustic the medication was and that was being put into bodies.
Ok so that was 10 years and more ago. Have the chemical concoctions changed much? I dont think so.

Let me explain some more.
I was called to the ER late on night to collect bloods from a man who had come in presenting with a sore big toe. He was supposed to go fishing with his mates in the morning and just wanted to make sure his toe would be ok. Maybe some antibiotics and he could be away. We took basic bloods to make sure that there was no infection. What came back was a very aggressive and nasty Blastic Leukemia  The guy was admitted for immediate treatment and his chemo began the next day. I had the job of collecting his bloods over the next three weeks. One day after a really hard bout of it all I was trying to get a small sample of his blood. His counts had been bad so we had to take blood more often. This huge man looked up and me and said just out of the blue, "I should have gone fishing". He passed away a few days later not having left the hospital.

That little story leads me to the real issue I am facing here.

It is not chemotherapy that is my issue. It is that I am being asked by those I love and who love me to change my beliefs on something that I have held close to me for a long time. Ideas that have defined who I am and how I have approached my own health. As I sat in that grey hospital room for the 15 days or so that I did, I wondered if I was going to get out of there. The Leukemia I have is similar in its nature to the guy who wanted to go fishing. It is aggressive and is fast moving.

I DO NOT want to die in a hospital bed not having had a chance to complete some of the things I have on my plate. I do not want to pass away not having been allowed to choose about the small bits like what I feel like eating or being allowed to walk in the park one more time. I do not want to subject my body to a treatment regime that has only a small chance of being successful. Stats, according to my current pathology, put my success rate at 20-45% of remission and in fact these are even lower because in one part of the report is states I have a "plasma protein membrane metabolic process defect that is as yet UNCLASSIFIED". Basically that says I have a problem with my blood cell membranes no one has seen before and as such they dont know how it factors into a success/ failure percentage rate. I am still waiting for chromosome studies as well and those are important because they too dictate statistical rates of success. If they are bad (and this is likely because I have at least 3 other documented DNA based health defects) then the success rates drop to less than 5%.

Do you still want me to have chemo? Do you still want to poison my body and hope like hell that I make it?

I have to say if this was a cancer like a bowel cancer or other organ that could have the lump excised mostly and chemo used to mop up the rest I would probably change my stance and go ahead with it. However, this is a blood cancer. It is something that affects EVERY cell in the body because the blood feeds every cell in the body. I am being asked to let someone fill me with toxic chemicals to kill all my blood producing cells and then to give me bone marrow from someone else to replace it. Ok maybe that is a very simplistic way of looking at it all but that is basically what I am being asked to do.

Stubborn... I hear you. I have looked and looked and talked about it and then mulled it over some more and then talked again and shared and cried and yelled and screamed and fallen into an exhausted sleep to wake and think some more. For the last 6 weeks now I have worked with this.

To take the step of treatment with Western medicine and Chemo means money as well. We have none. I have had offers from members of my family to fly me back to Australia to have care there as if would be free but I am not even stable enough to make a 13+ hour flight without a medivac assistance and that is costly in itself.

Ah she is full of excuses.... see I can hear you. These are things I have said to myself as well. Is it fear? Is it the thought of dying? Is it the thought of living through this to get another cancer later (the treatment regime has been known to give you other cancers within the following 3-5 years)?
In some ways my opposition to this is all of these things. There are other factors that are too involved to add here but they play a large part as well.

I know there are people out there who love me. I have some close to me and I have many far away. I know I make a difference each and every day to someone somewhere. I know that what I have to contribute is important to some more than others.  I know that for me to pass away will leave a HUGE hole in other peoples lives. That is not my ego talking. It is a fact of life. I have four children, a partner, sisters, parents, aunts, uncles, cousins and other friends closer than those listed who will be affected. This is the same for everyone who walks this Earth. People love and are loved. When they pass it leaves a gap. Yes time heals that in many cases but it still hurts like blazes when they go.

I understand that those who love me want the very best for me and want me to be with them as long as possible and that is what I want too. At the same time I also have a need to be respected for what I believe is best for me.
Right now my counts are bad. I had a transfusion last weekend that will be spent in the next days if it is not already. I know my days are numbered not in months but in weeks or days. I have been home for 6 days now and am in a space that I feel comfortable and comforted in. I have a freedom to be able to choose to do a little at my computer or in my home if I so want to. Simple tasks like washing up my dishes and sweeping the floor are now very difficult to do because I have little energy left BUT they are so rewarding when I do complete them. I have enjoyed the simple act of making myself some food and then being able to sit with my friend and chat while we share a meal. The alternative is to be alone in my hospital bed with people poking and prodding me with possibly the same outcome of my dying anyways.

Choosing this is not easy. I see the hurt in peoples faces, I have read the mails that hurt me because people dont/wont understand my choice because of their own agendas and I am human to in that I am unsure. I do not want to leave really but if I have to I want to at least know I enjoyed my final time instead of feeling like I am being subjected to Science experiments.
I dont understand why my body is doing what it is but I do know that if I stay happy and peaceful in my heart then miracles may still happen.

Thank you for reading my words. Maybe you can understand a little more now.Maybe you can understand you a little better,  or a loved one if they are facing a similar crisis. Maybe unconditional love can flow a little more.

Love and hugs
Tanya xxxxxx

Wednesday, November 14, 2012

Yesterday I ended with things left up in the air.
I know that was not nice but I was so tired and had to sleep.
So we start at that point again.

After the family conference it was decided I was not going to begin chemo. I have no money, no job and my partner has not got the resources to fund such an expensive treatment plan. I cannot commit to that when I have no idea if I can honour it.

I spent a couple more days in hospital and my fever settled so they made plans for me to leave. Then my period started. Flooding..... hormones to stop that all and a bag of packed cells later I am stable enough to go home. The first time in my life I have been given the gift of blood and wow what a lovely gift it is. Thank you to all the donors out there.
So on Saturday 10th I went home and have been here since.

We went on Sunday to the Thai herbalist to get some herbs to support my body. I am also vegetarian for the next weeks as the animal proteins feed the cancer apparently. Yes there are twigs, leaves, rocks (red and bright yellow as you can see in the pic) a termites nest slice, dirt and all sorts of stuff in there. I have been cooking this continuously since Sunday night and adding water as we go and drinking half a glass three times a day and taking some little black pills that are herbal as well.
Are they working ? I cant say for sure except to say my gut has never been so clean as what ever is in there has made my belly work more efficiently than in years and I do have a little more energy. I am back to a fever of 37.5 C (100F) but dont feel sick to go with it, just hot. I am sleeping a lot which is a restful sleep and now when I wake I have some energy to do a little which I didnt have before. Early days yet. I have a follow up appointment on Monday to have bloods done again to see if the transfusion cells are still active. We will decide what comes next as results come in.

I am still awaiting the chromosome studies as well. These are important because they will dictate success rates of an chemo therapy if we choose to do this. Depending upon how the DNA stacks up will depend up on the success. Already there is a big "if" because in the pathology from the bone marrow aspirate and biopsy there has been found a "plasma protein membrane metabolic defect that is as yet UNCLASSIFIED". Basically this means that there is something wrong with my  blood cell membranes that hasnt been seen before. Makes me wonder ????

So today I set myself a goal of what to do. Yesterday I did as well and I managed to complete it all (I wanted to write my blog, change the sheets on the bed, take my herbs etc as I needed to and to eat proper meals as well, yesterday I completed it) and so today I thought I would set my sights on a little bit as well. My goals today were to do most of what I did yesterday with regards looking after myself (yes I have eaten and I slept and I have written my blog LOL ) and I also want to shower and wash my hair. Instead I did a load of washing. It knocked me sideways. I slept most of the afternoon. I am still hoping to get up soon and at least shower because I need one LOL.

It is now almost 6.30pm and I am tired again. Shower will come later I think.
Thank you for reading. I will be back later or tomorrow.
Love and hugs
Tanya xxxxx

Tuesday, November 13, 2012

After I got my results from my first bone marrow to hear that the marrow was so packed that no useable cells were found and the bone piece that was collected had NO cells in it at all I was referred to the University teaching hospital. After all it is a learning experience for the young Drs in this fine country.

A lovely grey space that I stayed 15 days in.
No towels or soap provided. Ok I am able to overcome this. The big towel on the bed is my blanket. It was nicely stained even though it was clean.
Ok so what came next. I had waited 36 hours in the ER for a bed. That was fun. Mosquitos buzzing and biting and no food even though all the other patients were fed. I guess it was too scary to talk to the foreigner even though she speaks Thai.
We then moved to this room. That was Sunday afternoon and on Monday I had another bone marrow. Again the marrow was too packed to collect a marrow specimen but they got some blood from the bone with a few cells and the bone fragment she finally got after three tries was 2.5cm (1 inch) long and seemed to have some cells in it. Now I wait.
I had had blood taken each day to watch my counts. I also developed a low grade fever that has stayed with me most of the time since. It seems that is a reaction to the cancer.
So as my counts dropped and I slept and slept I waited for my results. The resident Haematologist came with the news that the diagnosis was now AML (Acute Myeloid Leukamia) but didnt know which subtype as he wasnt 100% sure from the smear. Maybe m0, m4 or m5 or a combination of them.
So waiting. In the meantime I saw the neuro guys about my head. It has been bad for a long time and has been getting worse as my health has deteriorated. I got to have eye tests and was told that maybe my shunt is malfunctioning and maybe it isnt but they have no idea. Maybe it works some days and not others, but cant say why. Ok my head is not the main issue right now, leave that one alone.
I had been in the hospital now for about 9 days when the Dr suddenly decides I need to start chemo. NOW!!!! I was like What? You dont know which cancer I have for definite and you want to start treatment??? I dont think so.
But we talk about it.
And talk some more.
And then have a family conference.
And money is discussed.
Cost...Minimum of $15,000USD per round of chemo as long as there are no complications or infections.Minimum stay in hospital to gain remission 1 month. Then there  are 4-6 more chemo treatments of one month stay at the same cost and surprise surprise a bone marrow transplant to the tune of $30,000USD. Grand total minimum is $120,0000USD. Cheap really. The clincher is I have no money at all. We had funds given to us and they are all gone as well as more than half next months wages already to pay for this hospitalisation.
Decisions are upon us. What to do?
That will have to wait until tomorrow or later because right now it is bed time and I am tired.
Love and hugs to all
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