April 15. Tax Day. Day of Reckoning…
Mom and I went for the appointment at Burzynski Clinic. What an experience.
First and Foremost – the feeling of Hope there is overwhelming. There is no smell of chemo, no sense of doom.
We met with Dr. Lordes Deleon, who would be my primary physician; Dr. Fu, an oncologist who came to The Clinic from MD Anderson; and Dr. Burzynski, himself.
It was a long time, took most of the day. And turned out to be very emotional. Eye-opening.
We had to go through financial planning, to be sure that I could afford the treatments. I don’t know how I will, but if I decide that this is the path for me to follow, I will have to find a way.
The final meeting with the Drs was the most relevant.
As we’re sitting there talking, Dr Burzynski keeps mentioning “the spread of the disease”.
what…?
“the spread of the disease within your body…”
what…?
So I am sitting there looking like a fool as the Drs inform me that there is a high possibility that the cancer has spread to my bones – specifically my spine – and to my chest cavity.
what…?
Dr Burzynski looks at me and says “surely you knew, surely your Dr told you of this?”
what…?
So, as Mom and I are sitting there, we all go over the results of the initial PET scan, the one that Dr Keller had read to us.
* At least 6 lymph nodes affected, with a stew of 7-10.
* Multiple left axillary adenopathy with difuse scattered activity within multiple nodes.
* Abnormal tracer accumulation in the mediastinum predominate pretracheal and subcarinal regions suggestive of subtle metatastic adenopathy disease in this region.
* Minimal scattered activity within what appears to be either the EG junciton or the thoracic psine as previously noted consideration to bone scan may be of further benefit to evaluate for an subtle osseous metastasis.
* Minimal scattered activity in the region of the EG junction which is difficult to evaluate if this is esophagus versus osseous abnormality and correlation with bone scan is suggested.
The Burzynski Clinic Drs are amazed that we don’t know this information, that Dr Keller didn’t go over all this with us.
Bottom line:
* The lymph node activity is much more than “2″ that Keller had told us.
* There is suggestion that the cancer may have spread to my bones and perhaps to my chest cavity.
* Several times in the report, the Radiologist suggest a bone scan – nothing was said by Keller.
Further tests are Definitely needed.
Keller simply neglected to mention this information to us…
Lovely.
Needless to say, I’m in a Total State of Shock…
