The blog journey of
Jodie L. Guerrero

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