BLOG 55
10 September 2015
Hello to my faithful family & friends
A huge thank you to my husband & kids for caring for me during transplant & post transplant.
A huge thank you to my parents (Robert & Linda) for caring for me post transplant, for 3 months - in their home.
A huge thank you to my sister (Sally) for her constant support & care.
A huge thank you to Elizabeth Parish & for her meal/cleaning crew, whilst I was in hospital.
A huge thank you to the meal/pastoral & leadership crew @ Bridgeman Baptist Community Church.
A huge thank you to the Living Faith Lutheran Church & Primary School for prayers & support.
AND to everyone else who has prayed for me (and continues to pray) and sent their best wishes, a HUGE thank you to you also.
Thank you for continuing to follow along on what I would summise as the most challenging portion of my journey. Pre BMT (19th December/15) and post BMT (Bone Marrow Transplant) - much pain in my bones, fevers and general unwellness was had by myself. Searching the world for an unrelated bone marrow match caught me by surprise, in how emotional I would feel towards the medical scientists working hard to save my life, the scientist who would eventually fly across several world time zones to receive a small bag of stem cell enriched blood and ultimately my donor, a 30 year old young man from overseas.
It was his sacrifice, of 5 days worth of stomach injections, then 2 days lying flat -1 needle in each arm- on an Apheresis machine that has continued to amaze me.
What is Apheresis? (ἀφαίρεσις aphairesis, “a taking away”) is a medical technology in which the blood of a donor or patient is passed through an apparatus that separates out one particular constituent and returns the remainder to the circulation.
His full body worth of blood, flowing through the separator machine 2 and 1/2 times in 8 hours. Not able to leave his bed for the 8 hours meant, sitting on a pan, when needed and not moving his arms for the entire time. I did this myself, when I was first diagnosed with NHL, to harvest my own cells. He would also have had side effects of the treatment, such as tingling lips and general fatigue. Then, the stem cells harvested from his blood were taken away (at his hospital, in his country) and counted.
It was found that he did not have enough stem cells to give to me from the first day of harvesting, he was required to then return to do the same thing all over again, the next day - as his blood was still rich with stem cells/bone marrow, following 5 days of injections with a drug called: SCF -
https://en.wikipedia.org/wiki/Stem_cell_factor
For a young man, who would receive no payment, nor even know who I was - to sacrifice all this for me - blows my mind. I still cannot fathom his gift to me. I am in the process of writing a thank you letter to him and his family for donating his time, effort and bone marrow to save my life. I cannot know his identity for a full year after my BMT. I would assume that this is to protect the process and encourage him/others around him - not to feel bad or responsible for any side effects, I might suffer from as a result of the BMT with his cells.
What also amazes me is that fact that I now own his DNA, in my blood and bone marrow. I also have his blood type now. If you took Blood/Bone Marrow DNA from us both, they would be identical. Incredible. After my BMT I also starting craving strawberry flavoured things. Not my favourite flavour before transplant, but it is now. I will have to ask him if he likes Strawberry, as it is claimed that the receipient of the unrelated bone marrow may take on some of the traits of the donor, after BMT.
So, surviving a BMT is something few people can claim to have endured or benefited from - for which I am eternally grateful.
Then, after a 2nd day - whilst I was waiting and having 7 days of chemo, in my country and with my donor's bone marrow in an ice box. A scientist courier got on a plane and flew around the world for me (and with my life in his hands) - on the 19th December/14 - finally, my rescue arrived at my hospital in Brisbane. What a miracle! What an incredible process! The actual transplant created a huge migraine due to the fact that my donor's blood type was different to mine and I required a certain kind of drug to stop a reaction of bad proportions. When his cells were injected into me, I had no live bone marrow, no capacity to produce my own diseased blood and the need to have 2 blood transfusions per day, whilst my marrow was being killed off by some of the strongest chemo available.
It was also a great opportunity to donate my hair to the Pantene 'Beautiful Lengths' Programme to combine into a wig for other women fighting.
Since December/14 until the writing of this blog some 8 months later (and almost 15kg's lighter!!) - I have been fighting what was possibly expected by my doctors a rejection disease called GVHD. Where his bone marrow and stem cells, now making their home in me and my bone's detect that I am a foreign entity and therefore they must fight to take over. As a result - in the last 8 months (and the reason I have not been actively blogging) - I have been fighting day & night against several versions of this disease, all over my body. Firstly skin, mouth, throat, eyes and now (as I write) - my lungs. Lots of steroids to try and clear the lung GVHD lesion (that I have still) have puffed up my face, cheeks and neck, plus given me a light shading of Elvis style male side burns. Woot!! Never thought I'd be able to grow side burns (even light ones) when even some men can't do so :)
You've gotta have some sense of humour on this journey. Some cancer patients hate the word 'journey' to describe what they are enduring, however I welcome it - as a portion of challenge) now 11 years in duration. I know this portion is temporary - this body is just a physical body and my eternity is simply the most important part of my exsistence. So, yes - I have my bad days - when I feel literally depressed and anxious about what my body has endured and is enduring currently. The drugs I take, (currently 44 per day) make me sleepy, drowsy and feel 'out of it' at times - so, I have to remind myself, this place, this journey is not my home.
This journey is temporary, on this earth - this physical life for me in my body is also temporary. Eternity with my saviour, surrounded with my treasured and loved family and friends is what I finally aim for AND I will get there, in God's timing.
So, when problems strike us - and they will, if we live on earth, placed here for a certain purpose - we must be brave, even in tears, even in whimpers, even in anxiousness. These are normal human reactions to difficult times, that often we have no control over or no predictable timeline to sooth ourselves in. It's the 'not knowing' what, why and how this is all occurring to our bodies that can be the most distressing - therefore I encourage anyone reading this, to read and educate yourself (as much as emotionally possible) about the disease you are dealing with.
Do so, only in a good frame of mind and when you can tolerate the information - some of it is dry and not written to soothe a patient, but more for fellow medical scientists. However, the more you know - the less distressed you may feel. At least for me, it works this way - but it's the choice of timing and when it is best to 'take it in' that is crucial for your emotional and mental health.
Let me also say, there is no shame in admitting that you may suffer from a post traumatic mental illness, as a result of your diagnosis - it simply happens to the human mind, regardless of how strong or faithful you may feel or be. We are all human and none of us should feel shameful or poorly for needing help or requiring medication. Below is a portion of my treatment timeline. My full treatment list is located on this page.
I am still writing my biography and up to chapter 20. It will have to be reduced and I've yet to touch my treatment aspect of the journey. However, my plan is to get a few days away to finish my first draft and then have it edited, hopefully within the next 6 months to present to my publisher. You can also see an interview with myself and Matt Prater on this YouTube video
https://www.youtube.com/watch?v=aey-KAi3_0w
for History Makers TV - a great project with some awesome world shakers, making a difference. The video itself will be sent to several inspirational TV networks around the world. My interview is located @ 44.36 minutes for those that need to skip ahead.
Thank you all over and over for your support, love and constant care.
Thank you for reading.
Much Love,
Jodie & The Guerrero Family xx
