I was hoping to post this topic yesterday but I was so not feeling well. Today is a better day.
Graduation March 2003
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