So first we had Bob the Blob and then Ted the Tumor. And you all heard the stories of both. Today is the tale of Larry the Lymph Node!!
Thursday the 1st of February, the radiologist took 6 needle biopsy samples from Larry. The nurse said probably Monday I would get results. Whether it is good or bad, most doctor’s have something like MyChart where I get an email as soon as something is posted to the page. It can be an appointment, test result, message or even a bill due. I still had not heard anything from Dr. Chen’s office or see anything posted on MyChart on Wednesday so I left a message with Shelby (Dr. Chen’s nurse). She did call me back at the end of the day and assured me that they did not have any more information and if they did not see something by Friday she would call the pathologist directly.
Thursday, I got a email indicating “test results” were posted on My Chart. What I found was a PDF copy of a report generated by the Hennepin County Medical Center Chief Pathologist on the results of a FISH oncology test. So off to Google I went to see what in the heck FISH Oncology is….found this… “test used to identify where a specific gene is located on a chromosome, how many copies of the gene are present, and any chromosomal abnormalities”. WOW, that was a mouthful of interesting information. Interesting to think what do they transport from Methodist to HCMC for the pathology to conduct this test. Do the full samples get transported? Are slides from the Methodist team sent? And if samples, are they transported in their watery bath where they are captured after the sample was taken. Just an interesting thought.
But at least knowing that the sample was sent out provided a good explanation on why the results were slow on coming back, but knowing a FISH Oncology test was done generated more questions than answers. Did the Methodist pathologist see something and wanted confirmation from another team, was the pathologist confused on the results, did the pathologist see something that was unusual. Did Ted the Tumor spread his sarcoma germs up to Larry the Lymph Node in my neck and they were seeing strange sarcoma like stuff in the lymph node? So lots of questions in my already busy mind. I did a lot of Googling on why FISH oncology is done, what it determines, etc. I was also thinking 15 years ago when I was diagnosed with lymphoma I am probably glad there was no MyChart, as I am sure all of the doctors were glad too!! No Googling or WebMD back then to get questions answer or to generate more questions and self diagnosing. :-)
A couple of minutes later, another email notified me that another test result had been posted. This was the final diagnosis from the Methodist pathologist and he also noted that he discussed his findings with Dr. Chen at 3 pm…this was close to 4 when it was posted. So I went to MyChart, and saw his very long and detailed findings talking a lot about T-cells, CD3 positive T-Cells, CD20 and PAX5 positive B-cells. T-cells also mostly CD4 positive and a smaller subset CD8 positive. Some positive for BCL-6 but negative for CD10. Some B-cell stuff too…as you can see a lot of medical craziness and details. Polytypic B-Cell population also identified. The final paragraph of the diagnosis said the following:
”Altogether, the findings in this biopsy are consistent for an atypical lymphoid infiltrate but are insufficient for a definitive diagnosis of lymphoma in this sample. An excisional biopsy of a clinically suspicious lymph node is recommended for further work up.”
To help interpret all of these details, Dr. Chen called me about 6 pm on Friday. She said there is a lot of detail in the Findings and she had been back and forth with the pathologist for the last couple of days discussing what they found. And they feel that they could not provide a definitive diagnosis with the needle biopsy samples and really need to examine the full lymph node to come to a full conclusion. The pathologist has recommended surgery and I asked Dr. Chen if she concurred on this recommendation and she said she definitely agrees with that recommendation. Because of the location, an Ear, Nose and Throat (ENT), surgeon would need to do this surgery. Dr. Chen said it is not urgent but she would like me to have the surgery done in the next 2-3 weeks. So a new adventure and journey to look forward to. :-)
How does this all sound to me? I am glad that we have some answers and a clear path forward. And if Larry the Lymph Node wants to be a nasty pest then I say take him out of there and they can ship him off to Mayo (after they do their tests), and let him sit in alcohol, or whatever they use to preserve samples, and become roommates with Ted the Tumor. I read that Mayo keeps their samples for something like 10 years so Larry and Ted can have a nice lab life together. Far away from me!!
But I did start physical therapy yesterday. And he even started it great with adjusting my walker…it was way too low!! The adjustment makes such a great difference in my shoulders!! He noticed right away that it was not adjusted correctly. We talked a good amount on his plan forward and with still having the brace on for 6 weeks, the exercises will be limited, but we will still focus on strengthening the quad muscles taking that restriction in to mind. He will work towards the 100% weight on the left foot by the end of the 6 weeks as the surgeon wants and shifting over to using a cane. Maybe I will be able to walk Max again by that 6 week period? I ordered from Amazon, a poop scooper that is good if you cannot bend over. I assume that bending over will take a while so maybe with cane walking being able to walk him will be possible. I told Tom the PT that I would just like to be able to play a little golf this summer. He said he sees that as a possibility. As I may have said in the past, stairs kind of freak me out trying to maneuver them both up and down. Only have to use stairs to leave the house so it does not happen very often right now. I expressed that to Tom and he ended our time with working with me on the stairs to try to help my anxiety of using them. I feel better but am still cautious, which is probably a good thing. I think the PT will be really helpful as long as I do my exercises at home!!
A long post today…hopefully you are still awake!
Again no sun….but some answers so that helps to reduce the gray a little. Open your heart to someone if you know they need it!! Take care!!
Dandy Ventures 