BLOG 26
12 May 2010
Hello family & friends,
I felt I must do a blog again, as so much as happened yet again and swift treatment is the name of this game. I am certain this is a relapse of Lymphoma, as we have now found an expert to confirm this. I discharged myself from hospital, May 09/2010 (so I was in for 10 days). That was enough for me. Good News (that I am totally elated about) - we now have a clear plan. My CT & BMA were clear, however we still search for the source.
Upon my insistence - my consultant has made contact with one of Australia's top Lymphoma experts. Upon seeing me, in hospital, my RBWH consultant (Dr. G (A) she is fabulous) told me about the annual ALLG conference in Adelaide. The ALLG is the chief conference every year in the Australasian region that hosts discussions between professors, consultants, and experts in Leukeamia & Lymphoma treatments, clinical trials and new methods of treating these diseases, in our region of the world.
My consultant and many others go each year. I knew that it would be probable that she may see PAH professor G (B), at the conference. Without a referral from my current Heam consultant, I cannot see professor G (B). I had first seen his work with Lymphoma on an edition of the ABC TV program, Australian Story. The episode was called From My Fathers Fridge. CLICK HERE to read the transcript of that program.
My wish to see professor G (B) stems from first seeing his story on Australian Story and his understanding and research into odd and asymptomatic/complex presentations of these blood diseases that may persist and cause problems for the patient. I knew that because the disease was tricky, I may need to talk with him someday. I just knew somehow and felt led to remember his name. CLICK HERE to read about the work of his Lymphoma team at the PAH.
Upon leaving my hospital room, requested my consultant to please speak to professor G (B) at the conference and ask for his advice. This did happen and she told me that yes, he had seen my symptoms before when biopsied as a low grade Lymphoma, but only in 4 patients in his whole career (about 22 years). Normally a low-grade/slow-growing Lymphoma does not attack nerve roots, only aggressive Lymphomas.
So, I have an urgent referral to see Professor G (B) at the PAH, May 14/2010. We will discuss a way forward from there. A lot could happen from this point and my situation is changing daily with a familiar symptom reappearing 2 days ago. The addition of that familiar, now new symptom confirmed to me that it was back, for sure. May 11/2010, I had a Lumbar Puncture to withdraw fluid for testing.on May 17/2010 we plan to do another Lumbar Puncture and inject a dose of Cytarabine, to try and return my leg to normal and relieve pain in the back. Thank God for sedation. This injection of chemo will only have a temporary effect and so a more lasting solution is required. Today also, I had a PET scan at the RBWH in search for cancer cells, located around the body. PET technology/nuclear medicine and the use of radioactive isotope for detection of cancer cells is quite amazing and saves many lives, every year.
I feel strong, calm and not worried at all. It all seems so standard to me now. I just trust in God and walk on. I think thats just what I have always done. It's part of my personality to not give up and keep going and persist in all things & circumstances. Do I really have a choice for not walking on? I am too young with too much to continue working towards and I love being with my family & friends. Its not my time and I will never willingly give up. Bless you all, I love hearing from you all.please send me your prayer requests also.
My story and journey was also recently featured on the front page of the 'Challenge News' Newspaper (Circulation is 50,000 Australia-wide. CN is also going to try to submit the story for the South-African edition, Circulation there is 300,000). Click on the links below.
Blessings 2 U - Jodster.
CHALLENGE NEWS FRONT PAGE FEATURING JODIES JOURNEY.
CHALLENGE NEWS ARTICLE ABOUT JODIES JOURNEY.