BLOG 62

05 August 2018

Hello to my faithful family & friends

For the past 3 + months, this R swollen ankle has been a total mystery. No break on X-Rays and no fall that I can remember. However, after a nuclear bone scan, 2 sore locations on either side of the foot, correctly revealed a lit-up patten of ‘Osteoblasts’ or ‘New bone growth’ in those sore locations. The pain (even with pain relief) was strongly felt, although without extra meds, I wouldn’t have been able to move. The nuclear science doctors, who recently performed a bone scan on the foot, agree that it is possible stress fractures and/or arthritis, caused by what happened to me 10+ years ago.

The R leg is weak, due to extensive tumours that were located (delayed) in and around the S1 back nerve root and the Sacrum bone. As a result of the delay and weakness, I now have atrophy of the leg, drop foot, nerve pain (controlled by drugs) and a very susceptible foot to breaks and falls, etc. There is not much I can do - but try to rest and let it heal, which is why ‘Osteoblasts’ were detected. On another front, due to my increased nerve pain in the S1 - I convinced my Neurologist to consider an MRI for the purpose of ruling out new tumours. She quipped that MRI’s has never been very good at isolating evidence that I had active disease munching away @ my nerves or bones. However, I told her that I should have one - just in case.

She eventually agreed. So, we found nothing but regular scar tissue - of which tightening of the scarring had to be accepted as the cause of my increased nerve pain. However, we found accidentally (another rare) and nasty long term complication of my GVHD (Graft Vs. host Disease) rescue, post transplant (3 years ago)!!

The MRI revealed a vacant cavity in the top of my R hip bone/ball - top of the femur. Not yet causing me pain - I was then told that in the near future to halt the disease (called Avascular Necrosis or AVN) I’d probably need a hip replacement!! Yep, you heard right!! A hip replacement. Little by little my bits are being replaced with other peoples or from a plastic/metal form. I was totally stunned to hear this. AVN is caused by many issues and is basically ‘bone death’ - however, my Heamotologist was able to pinpoint my cause, as 3 years ago, after transplant to be rescued from GVHD, I had to have a drug derived from the glands of a horse, called ‘ATGAM’, coupled with 5 day’s of massive steroid infusions if 1,000mg per day.

To put that in perspective: I currently only take 10mg per day. 1,000mg is massive and now 3-4 years down the track, is causing this new disease. But, like before - I have to be strong and busy and happy - as being anything other that that is a lie of a life and not something that my path wants me to follow. WWJD? Simply put: Jesus never lamented for the state of his body - but, put it all in God’s hands. Regardless of his pain. My pain is also in God’s hands. This is all a bit of a surprise - however, nothing much worries me any more. There is nothing I can do to change any of this, except to pray and trust in God. I have the best doctors and mostly, they deliver for me - what I need in a timely manner.

Remember if you are facing your own issues and need an advocate to support you and communicate for you - I am available. Just go to my contact page and see the information there to make a booking. I can advocate for anyone, worldwide. The below photo was in regards to my recent blood collection to make my Autologous Eye Drop Serum. The Serum is similar to 'tears' and helps my eyes cope with the GVHD disease, after transplant.

Thank you for reading.

Much Love,

Jodie & The Guerrero Family xx