And it is Hodgkins Lymphoma (Lymphocyte Predominate)!! Get that out there right away! So it has been an interesting last few weeks, which is why I have been pretty silent here on my blog.
We always knew Larry the Lymph Node was not nice at all!! He was trouble from the beginning when the biopsies were inconclusive and they had to take him out. I know he was laughing thinking that we could determine exactly what he was by a simple needle biopsy…LOL…even though they sent those to Hennepin County Medical Center pathology for a 2nd opinion, he was not going to let us get by that easy!
So on Wednesday March 13th, I went back under the knife and in to la-la land while my surgeon, Dr. Victoria, Rohman, removed Larry and sent him packing….or so we thought…LOL…. And since this was a Wednesday, I knew results may not come in by the weekend. Larry was a pretty big bugger in that the surgeon talked to David and said he was almost 2 inches around — plenty for the 1 inch that Dr. Chen was hoping to get. The surgeon also removed a couple of small ones that were next to Larry that looked suspicious. See Larry was already out trying to recruit more nasty lymph nodes into his clutches!!
Monday the first results were posted on MyChart — it was what is called Flow Cytometry, and the surgeon added a note that the pathology was not complete yet and the Methodist pathologist was consulting with and expert with the National Institute of Health/National Cancer Institute. So see as I said we thought once Larry was extracted, we would get some results and move on…but no, Larry had to be difficult!!
Dr. Sterania Pittaluga, MD, PhD, from the NIH/NCI, finally submitted her diagnosis, which she basically concurred with the Methodist Pathologist with the following: Nodular lymphocyte predominant B cell lymphoma, grade 1; nodular lymphocyte predominate Hodgkin lymphoma. And that these results were shared with both Dr. Rohman and Dr. Chen on 3/20. I did leave a message for Shelby indicating that I did see the results on MyChart but was hoping I could have 10 minutes to chat with Dr. Chen to get a better understanding of what this meant. I certainly did a lot of googling…LOL… but just wanted to know exactly what I was dealing with here. Shelby’s notes indicating that Dr. Chen wanted to talk to me directly. So this was the 20th, the 21st went by and so did the 22nd. I did leave Shelby a message on Friday, the 22nd indicating that I had not heard from Dr. Chen at all at this point. Shelby called me late on Friday and said that Dr. Chen was on hospital duty all week but that she would call me sometime probably over the weekend.
The weekend went by with NO calls….Larry again using his magic to generate stress for me!! I did not need all of the answers I just wanted to know what in the heck we are dealing with here!! Finally late Monday night Dr. Chen finally called. She apologized profusely, the hospital week rotation was very long days compounding by being on crutches her days did not end until 8 or later and she thought that would be too late to call!
So to make a long story short (too late for that at this point) it is the Hodgkins Lymphoma, sub-type lymphocyte predominate, which is the same diagnosis that I had almost 20 years ago. In essence, it has come back and who best to carry that banner, but Larry the Lymph Node. 🙂
So what are next steps? Dr. Chen would like to get a PET scan and bone marrow biopsy scheduled as soon as possible…hopefully next week. I was scheduled to go to Mayo this week for my 3 month check and they had planned to do a CT scan. Dr. Chen was concerned that insurance would deny the PET if the CT was done, so I messaged the surgeon at Mayo, told him the circumstances and asked if we could cancel the CT at Mayo and then I could have the PET and Chen would share those results with the surgeon. He absolutely understood and did not want to at all jeopardize any tests that Chen wanted to do, so the CT was cancelled. (Mayo follow up went well and I will write about that in another post)
Dr. Chen did say that once the results come in from the PET and bone marrow, she will most likely reach out to her Mayo lymphoma peeps and check to see if they concur with her treatment plan. If it is just Larry that was the only troublemaker, then radiation may be enough…if others than most likely chemo. As I told Shelby when we talked Friday night if I need chemo, I am going to change my hair color to all purple to signal my protest to cancer. Poor Shelby said oh wait until you hear from Chen on the treatment plan…LOL…she did not want to be responsible for my changing my hair color! Pretty funny!!
So now we have most of the details. I hope some who read this do not think I am being flippant about this cancer diagnosis. The best way for me to handle this right now is with a sprinkling of humor! Believe me, I have my days since this looked like what the diagnosis would be where I just sit and almost only stare out in to the distance. Any cancer diagnosis is scary! Certainly I worry…I have won gold medals in being a worry-wart, so I do worry, but it is out of my hands now. If I didn’t use some humor, I know I would cry! So it is how I handle this, trying to have some humor and going with the flow.
The sun is out today!! Keep your sense of humor, it’s critical!!
Take care!
Dandy Ventures 