BLOG 29
02 August 2010
Hello to you all,
So much has happened since my last blog and many people have been asking what is happening with me. I have deliberately decided to not overwhelm everyone with too many details, as I am sure it can be confusing and difficult to read, at times for some people. My birthday is on August 06 so glad to reach 39 and still be smiling. So, heres another blog for now to tell you all where I am at.
My last blog left my readers at the last fall (number 3) a week after recognizing that we had an injury, we knew we had to try and inject more chemo into the spinal fluid to try and holt the R leg weakness again. 7 days post this particular LP and there was still no change to the leg it was still weak and getting weaker. We used a chemo drug that we had used for LPs on relapse 2 it is called Methatrexate. The first dosage LP we performed this time, was with a drug called Cytarabine and we had 2 weeks of response to this drug (i.e: weakness & pain disappeared).the reason we changed on the second LP was due to the haziness/confusion the Cytarabine drug caused me post treatment. A bit like I was drunk and high for 6 days straight might sound appealing to some, but believe me it ain't. Writing a tiny email in that haziness took me about 30 minutes!! This Cytarabine drug was recommended to us via Professor Gill and is used because it crosses the brain/spinal membrane into the sciatic nerve, hence the reason I felt like I was drunk for 6 days.
In the foot department, the results of the CT on my L foot, showed 2 bone breaks, 2 bone fragments (Calstumdum & Talum bones) and the ripped tendon.although no surgery was needed.a moonboot was suggested, particularly due to the R leg still being weak, I will wore a moonboot for an additional 4 weeks. The moonboot is now off.
After we realized that my leg/S1 nerve was not responding to the second Lumbar Puncture Chemo inject, we made a decision to proceed with a transfer over the the second medical facility for on-going treatment (PA Hospital).this was mid June. Since that time, I have had an extended CSF diagnostic test of the spinal fluid (another 6 days of migraines) which turned up nothing unusual and 2 more plasma infusions. I also consulted again with the Professor at my new hospital and will see him again in another week.
We are planning the following additional consultations, prior to commencing systemic chemotherapy:
Stem Cell/Bone Marrow Transplant Specialist
Radiation Oncologist
Neurology Specialist
Heart test/Bone Density test
I have also been researching as much as I can about the nerves and Lymphoma.upon Goggling Nerve Roots Lymphoma and researching more, I came across a word to describe a secondary cancer called Neurolymphomatosis then googling this term also brought up a medical document that described the symptoms of this condition and a case study of another patient. As I read through this article, I was amazed at the similarities to me and my symptoms. It was quite obvious that this was most certainly what I was dealing with. I urgently emailed my professor with the document and his response through his staff was that he was aware of the data. A nerve biopsy will be the only way to confirm a diagnosis of Neurolymphomatosis. Finding this information could be seen as very sad (it would be then that I have 2 forms of cancer/Lymphoma) however, I see it differently the more we know the better we can understand and treat appropriately.
As I continue treatment & active consultation, other Jodies Journey events are always happening, as I continue to use my story to raise awareness. My story was again published in the latest winter edition of Christian Women with a small update plus a lovely letter regarding the impact of my story was sent to Challenge News, who published my story recently. The letter was from a port missionary/chaplain from European Christian Mission and is posted below, it is a treasure.
The great positive out of all this is using my experience to help others, which I love doing and so many people contact me to ask for advice surrounding this I have been developing a new website venture , which I am hoping I can launch as a small business in the future. I have now published the site www.consumerconsultation.com is specifically for consumers to meet consumers to consult about their medical experiences and also their hospital/health rights. I am looking for more consumer consultants so if you think you would like to be involved, please sign-up.
Well that is all for now, as I approach this next challenge and pray that my leg responds to ultimately the PA Hospital treatment I encourage you all to keep preserving in whatever you face. Many people come to me with their own difficult stories, prayer requests and experiences. I try to use my circumstances to change their outlook on life and so, want to inspire you all to continue even when the sun does not seem like its gonna rise.
Blessings, Jodie G.
