BLOG 39
29 June 2014
Hello to you all and thank you for reading my latest blog,
(NB: I am working hard currently on writing my autobiography – my full story of my life and journey. How I have survived and made it through. I am half way through. It is planned that it will be published after completion by an Australian worldwide publisher in Sydney - I will advise when it is on the shelf).
Before you read:
DON’T FEEL SAD FOR ME
DON’T FEEL THAT I AM HOPELESS DON’T FEEL THAT I DON’T HAVE ENOUGH FAITH OR AM NOT BEING POSITIVE ENOUGH.
THIS IS LIFE – IT’S SIMPLY LIFE, IT IS JUST PART OF MY JOURNEY.
PASS YOUR STRENGTH TO ME AND USE THE STRENGTH I HAVE.
INSPIRATION IS TO BE EXCHANGED – PRAYER IS VALUED, FOR WHICH I AM THANKFUL.
I relate to the above picture - what does it mean?
Some of us are yelling to 'get out', some of us are 'taking it easy'
(not realising how close our treasure really is), some of us have continued to dig a
and found the gold and some of us have dug through the gold to find
the 'mother load' - the diamonds of life. Which one are you?
Great things that have happened lately:
Greg and Jodie were invited to meet n greet with the legendary crooner in May/2014, Mr. Michael Buble (Photo Above), Jodie was able to share a bit of her story with Michael and provided 2 signed books for himself and his beautiful wife. THANK YOU @Telstra and @Coueecommunity for the opportunity!!
Recently, a televised version of Jodie's story was broadcast as a featured story on History Makers TV (Brisbane community TV station - 31 Digital), in June/2014.
Jodie also had the priviledge of meeting one of Australia's most inspiring sport's women - Ms. Alisa Camplin - at a Business Chicks breakfast, Jodie spoke with Alisa about her journey and provided her with a signed book (Photo Above). THANK YOU @CBAWomeninfocus and @Businesschicks for the opportunity!!
MORE ACTIVITIES AT THIS LINK!!
I treasure every one of you that stop by my website and blog. Wherever you are as you read this, from worldwide destinations, thank you for stopping by. I provide information and inspiration to thousands who come to read, not just to read about what I have been through, but what I have learnt through my journey, over time.
So, tell your friends to also visit – to gather glimpses of inspiration from a place of optimism and hope. Regardless of my circumstances – I always share from a positive view point. I am aware that not-so good news does no favours for anyone. So, as long as I have breath in my lungs, I will always find hope, regardless of how I feel. Hope is everywhere, sometimes we just have to look a bit harder. My future is forever not in my hands, but in much bigger hands than mine.
As I share the following, I do so carefully and not to upset. However, the latest development in my path is simply what has occurred due to past medical delay in treatment and then strong chemotherapy and radiotherapy x 63 to counteract the disease I first encountered almost eight years ago in late 2006.
I have decided to share this (at this point) to seek prayer and support from my visiting website supporters & social media friends. I may need my support team now more than I ever had before. You may also need me, what you will learn in this blog will blow you away. I continue to tread waters I never expected, good and not so good – but, it’s a journey and even the difficult bits can be used for good, for education and for improvement, in health and in life. That’s just the way I see life.
This is not to say that I want to be perceived as a declining person in any sense, I am able to do most of what I have done before, however I now need a little more help at home and I’m using a scooter for all distances, prior to November last year, I used it rarely. My experiences, through this part of my journey may help some of you through your own challenges, medical and otherwise. Strength comes via continuing challenges – regardless, I don’t want to end up in a wheelchair 100% of my life.
My two female heroes now are the amazing Fanny May Crosby and Joni Erickson Tada – who both lived/live with physical limitations and found ways to continue an important mission. It’s these very women that inspire me.
IT’S IN PHYSICAL WEAKNESS, US WOMEN FIND OUR STRENGTH.
WHAT IS GOING ON?
It has taken me some time to get to this point, to put this in words and to find some answers to share with you all. So, here it goes. At this point in time, there is no scannable/visible Lymphoma, so we assume Lymphoma is not my current issue. Of course, I am hoping that is a permanent thing. However, I will be closely monitored for return of disease.
In November, 2013 – I tried to start my Christmas shopping. It was just a normal day, but suddenly I noticed I couldn’t walk as far as I used to. My leg was just getting tired sooner and my leg muscles would weaken and feel painful. I used to be able to walk the distance of maybe 25-30 stores in my local Westfield shopping centre. It was as if I woke up one day and my mobility ability (in regards to my right leg) was no longer what it was in October, just one month prior. I thought maybe, I was having a tough time, a bit more tired or maybe I need more sleep, more rest. So, instead of panicking – I just watched it. No improvement at all, in December or January 2014. I was starting to get concerned. Maybe I was just making it up or not focused on staying well – we have all sorts of silly thoughts when things don’t go our way.
However, when I noticed R back pain as tried to sleep in January/14 despite medication – I knew something was up.
BEING PREPARED, OPTIMISTIC & REALISTIC.
We knew that my leg function was not improving, due to what we thought (or what I called ‘Peripheral Neuropathy’, for lack of any other explanation). However since the problem of scarring developed in 2010, I had been preparing our family – building a special house – equipping it with rails, steps and taking it easier physically. We have been fundraising and seeking support for Hydrotherapy equipment for a small hydro pool. This will assist our daughters and me. Exercise (in general) will not reverse the damage to my S1 nerve, but may help, particularly by keeping me mobile and reducing my pain.
We have raised a little (thank you to those who have helped so far) and are waiting for approval in the new financial year for a possible sponsorship from a pool company – my hope is to help others beyond my own issues, requiring Hydrotherapy – in our own community. We are waiting for a donated hydrotherapy pool.
Exercise in a Hydrotherapy warm pool may help me to get more strength back to this leg. Regardless, it is still good for me and the family (our two girls also have disabilities). We always welcome more support for this project and would love to help supply more pools for others families, in the future. If you’d love to help us see this dream come to fruition, let us know.
I guess though, none of us are prepared when severe change happens suddenly – the emotional and mental impact often needs to be managed, with the physical symptoms. This is also what I have been doing with a local therapist. Keeping my emotions and mental state in check, receiving therapy and having discussions with a professional, trained in mental health. This is particularly important for me. For the last four years, I have worn a brace on my right leg, called an AFO. Although, I have had two serious falls with two small L foot breaks, I have stayed ‘break & fall free’ for the last two years.
THE DOCTORS AND SCANS.
In late February, I presented my new symptoms to my Haematologist. We arranged urgent MRI and PET scans. The PET was clear with no detectable Lymphoma cells on scan. However, the MRI showed major new issues in/around the S1 Nerve and Scarum Area.
Including the following:
Prior scans: dense sclerosis in the R ilium.
Prior scans: intense enhancement in posterior aspects of the sacroiliac joints, bilaterally.
Now – moderate increase in the size of the region of intense enhancement, in the R aspect of the sacrum.
Prominent increase in the enhancement in the adjacent R sacroiliac joint.
Enhancement is present in the medulla of the R ilium, adjacent to the sacroiliac joint. Unchanged since last MRI.
Insufficiency type fractures are present in the R aspect of the sacrum.
The fracture line adjacent to the mid R sacroiliac joint had become prominent in the current examination.
Minor increased enhancement in the soft tissues adjacent to the anterior aspect of the upper R Sacrum, extending to the R S1 exit foramen.
Some enhancing oedema is presently centred in the anterior aspect of the L sacroiliac joint.
Very advanced degenerative type change in the L5/S1 disc joint. No narrowing of the L5/S1 central spine canal, nor of the exit foramina. Increased enhancement is present centred on the R L5/S1 apophyseal joint.
Final observations are: Insufficiency (stress) type changes superimposed on a background of a diffuse sclerosis in the R ilium and mild osteoarthritis in the sacroiliac joints.
A previous CT showed mild osteoarthritis in the sacroiliac joints, bilaterally.
NO SIGN of a mass lesion in the sacral spinal canal, nor the sacral exit foramina. Yay!
WHAT DOES ALL THAT MEAN?The area of my lower R back, Sacrum and ilium have been left in a bit of mess, as a result of diffuse disease (tumours and tumour scarring) + progressive possible ‘radiation fibrosis syndrome’ or ‘radiation injury’ to the same area. In late 2006, as part of our sudden discovery of Lymphoma everywhere, we had to start emergency radiotherapy to initially save the functionality of my R leg from disease. My perception and thoughts are that had I been diagnosed earlier, disease would never have reached my lower back area and would have been confined to treatment in a localized area. Because, it was allowed to spread, it caused a lot more damage to my ‘internals’ and left pain in its path – similar to a tornado going through your inside tissue. Only now, eight years later is this damage finally becoming life-altering and making more of an impact on my mobility.
Although, I have always been faith-filled and optimistic, one couldn’t help but wonder what had happened to the areas where disease had been. At the time of initial treatment, I knew little about ‘delayed radiation injury’ – particularly in very sensitive areas, like nerve roots.
I originally had 10 sessions of 30Grey radiation to this area, when doctors realised (in late October/06) that my mobility was threatened. An overwhelmed and white-faced registrar gave us only 1 hour to decide if we wanted my ovaries surgically moved away from the radiation area to avoid sterilisation. However, we choose not to go through a stressful operation on top of the coming radiation & chemo. Although, we had 2 small kids (at the time, six & three) and although, we always wanted three kids – I had to say ‘goodbye’ to that, right there in the hospital ward. It was a bit of a bummer – however, I had to think of the risks and how I would cope with an operation and more treatment which (we were told at the time) may have possibly caused me to become sterile, in any case. I had to just progress and do what I had to do. My life was more important.
We knew for sure that keeping me alive and functioning as a wife and mum after were my top priorities, at that stage. This was also a choice hastened by my need to retain my right leg. I didn’t want to stop walking I was already in excruciating pain. No sleep and a constant pressure & pings of nerve pain pushing into my S1 nerve & sacrum area – also going down the back of my R leg. I didn’t know what my S1 nerve was or where it was before this, but now I knew – it was making its anger very clear to me. My right leg and back would go into spasms and the only way to get relief from the pain was curling into a foetal position (with a good dose of morphine) to numb the nerve sensations.
I remember going into urgent/emergency radiotherapy within the hour. I remember laying on the radiation table and praying this would work and saying goodbye to the baby I may have had or wanted to have. However, I was grateful for the treatment and wanted to live for my two babies at home with Dad.
To cut a long story short: the delivery of radiation was not a ‘large’ dose – at least not to my radiation oncologist – they tend to see what I had as a mild-moderate delivery of radiation. My consultation of my hospital’s top radiation oncologist’s in April this year, revealed some interesting facts. His perception is this: he has seen some people withstand 60Grey radiation with many more sessions than me – and have no adverse effects or scarring long-term internally. However, he also expressed that some people are extremely sensitive to radiation – even though they are ‘one in a million’ at the dosage that I received. I consider it similar to the damage that occurs to people many, many years post radiation fall out, like in locations such as Chernobyl, Ukraine and Fukushima, Japan + others.
There are generally no adverse effects straight away to those who have been exposed to radiation, however many years post exposure the exposed person can experience physical damage, as a result. The damage can worsen with time. I find it odd how the body reacts so slowly to radiation therapy. I have heard of breast cancer survivors, who have had radiation to under-arm lymph nodes and twenty years later waking to find they can no longer move their arm, due to radiation scaring.
Thus, this seems to be the same with what I am facing – however, only in the concentrated area that radiation was aimed. Not a full body illness or scaring issue, like in a nuclear disaster. There was no way of knowing seven years ago how my body would react. I also had very concentrated and high dose chemotherapy delivered to the nerve area when I relapsed a 2nd time.
This all makes very clear the reasons, I do what I do. My goal has always to be positively impact the public, those in office/world leaders/influential people and the medical profession with my story, to bring hope and raise awareness – particularly about the signs of Lymphoma. How many lives can my story save? – countless!! How many lives did my medical negligence case save? – Countless!! And hopefully it also produced a better doctor on the other side. Stand silent and others die – speak loud and many will live.
Back to my medical journey – if we combine all of this former tumour damage, treatment damage and radiation damage – the area clearly looks abnormal and is performing abnormally. I also use four pain medications including 24/7 Morphine to manage body aches from my last systemic chemo (Fludarabine) and also acute nerve pain from the scarred S1 nerve. Without the medication & extra rest, I could not live a normal life. I thank God for good doctors who provide this medication for me.
I knew my leg function was getting weaker, slowly over the last four years – it was apparent, in sensation and in ability. The scar process has now sped up and the pull of the leg on my Sacrum bone has fractured it in two locations OR the bone is weaker due to the radiation itself – which can weaken bones.
Don’t fret for me – there is some hope.
WHAT CAN WE DO?
Many years ago when my leg started to weaken – we had briefly spoken to my radiation oncologist about ‘hyperbaric oxygen’ and using a hyperbaric chamber as a way to re-oxygenate the tissue and scarred nerve area. Bringing more oxygen to the area will allow the body to heal the area faster and/or slow down the scarring process. There are no guarantees that chamber oxygen will work or slow down the scarring, however – there are two randomized studies that have indicated that this therapy may help the nerve area, providing more strength to the leg. Then again, it was mentioned to me that if the scarring is caused by old tumour burden/scarring and not ‘radiation injury’ – any future treatments may have no impact at all.
There is also the possibility that the scarring/damage is a combination of old tumour burden AND ‘radiation injury’ or what doctors calls ‘Fibrosis’. The hospital hyperbaric consultant did mention that a piece of the Fibrosis can be analysed under a microscope to determine what has caused the scarring. He mentioned that the fibrotic tissue of old tumour and ‘radiation injury’ looks different and could determine the cause. However, my Radiation Oncologist disagreed and said for a very invasive procedure, it may prove nothing and cause further damage.
This possibility – after my own careful research – is what I re-presented to my radiation oncologist once again when both Greg and I met with him & his registrar in April, this year. We discussed possibly up to 30 dives in a hyperbaric chamber in my hospital to get me more mobile again.
However, my radiation oncologist had another idea. An older (non-PBS listed) medication combined with Vitamin E had been tested for this purpose on pigs in France and showed some promising results, in terms of bringing new blood supply to the scarring and provide revascularization of the area, therefore possibly bringing more movement to the leg and therefore ‘saving the leg’ – ultimately restoring my mobility. This however, is not the original intention of the drug, called ‘TRENTAL 400’ with an active ingredient of: Pentoxifylline – usually used for chronic occlusive arterial disease of the limbs.
It is not funded by our PBS medication system. Therefore, with our doctor’s recommendation, we have chosen to proceed with this medication on a trial basis and with funding from a hospital committee – the medication should be free for me, hopefully for the trial period of about 6 months. Each box costs $120-. We are awaiting approval from the hospital medication committee to pay for this drug.
Once I receive notification of this, I will be trialled on it. I will be closely watched and if it does not produce the desired effects, we will then try the Hyperbaric Oxygen therapy. If the oxygen does not work either, we will do all we can to modify life to accommodate for the loss of mobility. In any rate, whatever the medication or therapy does or does not do, we will modify whatever we have to and continue to hope for a better outcome.
I have also seen my neurologist – she initially diagnosed this condition. All of my doctors in every quarter are top in their fields.
In the meantime, I will be registering for domestic assistance as shopping, cleaning, and cooking all those typical Mum jobs are obviously getting harder and harder for me to perform.
WHAT CAN YOU DO?
Pray that I won’t have to face cancer for a 3rd time all future scans will show NO cancer.
Pray that my bone marrow will stay healthy and not be harboured with any Lymphoma.
Pray that the medication and hyperbaric oxygen works, more than we expect.
Pray that my S1 nerve will allow messages from my brain to get through to my leg. Pray that I won’t have to end up relying on a wheelchair for mobility.
Pray for increased Sacrum bone strength – no more fracture of the bone or scarring.
Pray that we can soon get the hydrotherapy equipment that we need.
IN ADDITION
We have now finished our ten year old daughter’s diagnostic journey. She has two physical areas of concern that are being treated with therapy and medication + she has now been confirmed through one year of testing and therapy to have an SLI (Speech Language Impairment). An SLI impacts her reading, writing, maths and other areas. Her main area of difficulty is in expressive language and this is currently being managed @ school & home. An SLI is the only ‘speech disability’ that attracts funding for her school. This provides her with intense teacher aide support in her classroom.
The process to attract this funding and therefore more help for Anna is called ‘SLI Verification’ and is an educational process that will be carried throughout her educational life – up into year 12 and into university studies, if she wishes to progress in that direction. The school is now in the process of having her 'verified' by an independent schools board for funding to support her with extra teaching assistance until year twelve. It has taken fifteen months of testing to get to that point and thousands of $$$ for us and many medical appointments to figure out our daughters puzzle.
So glad that is all over. Now to slow down my leg weakness and hopefully fix this issue.
Your prayers and support are greatly appreciated – use my knowledge and journey for your own issues and health journey. Maybe you also are going through a tough circumstance in your life and requiring a boost of hope and inspiration.
Read my words and understand – that I could have given up long, long ago – but have continued to have faith, hope and optimism. That’s what life is all about – when the pan gets hot – by all means, do something about it – jump out!! But, use your scars and knowledge to make a difference to others. Be generous and don’t be victim. Revel in your victor knowledge that life and health are very much worth fighting for.
God bless you all xx
Blessings from - Jodie Guerrero