Our visit today at Emory was terrific; however, I got a call from the oncologist at Vandy just a few minutes ago that is giving me a lump in my throat.
Emory was fantastic. Their cancer center has scale enough to convey comfort to a potential patient, yet is personalized enough to make one feel ‘known’ (not the feeling of steerage I perceived at Vandy, on occasion). I got another blood draw (must be at least the 6th prick since all this started), and then we were greeted by a very nice social worker who sat with us to hear our story. A social worker?! Of course! This is how it should be done: surely someone needs to make sure every newly-diagnosed cancer patient has adequate access to information, is managing the stress/anxiety in an appropriate manner, and has the relational support resources to see them through the valley. The social worker was able to turn us onto some new resources regarding fertility, as well as some support groups that I think we’ll eventually explore.
We then met with the fellow of the doctor we were there to see. She took in most of the nut-and-bolt information on my situation, did a quick exam, and then fielded preliminary questions. Then, the main course was served: Dr. Flowers, director of the Lymphoma program at Emory. This guy… is Tiger Woods! I really mean it—my doctor… is Tiger Woods! He must have a twin. You be the judge:
His mannerisms were even the same. You could swap out the white jacket for a putter and autographs would’ve been in order. And the best part, is that when Tiger wants to win, he wins. I expect no less from Dr. Flowers.
He is on the inside track for Lymphoma research and advancements in treatment. He said that the first thing any person must do is have a professional Heamatopahologist at a teaching institution re-diagnose the cancer as a confirmatory step before any treatment commences. In my case, this is what Vandy was enlisted to do. Remember this piece of info, as it comes in handy later. If indeed it confirmed that I have diffuse large B-cell Lymphoma (DLBCL), then the R-CHOP would be in order. He echoed nearly 100% of what we had heard at Vandy… which fortified my hope and optimism.
I then shuffled across to another building to get an EKG (a few electrodes hooked up to my chest) and Echocardiogram (an ultrasound of the heart) to ensure that my heart is healthy enough to withstand one of the chemo poisons, Adriamycin (which can cause congestive heart failure). I think things looked ok, based on the quips of the technician who was doing the read. I found it humbling to lie on a table and see my very own heart on a screen, beating every single second, without fail. It really is more delicate and fragile than I ever imagined. Truly a miracle to think that it’s working when we sleep, when we’re awake; when we rest and when we exercise… and is one of so many absolutely critical human elements. I laid there in awe. I felt like I was staring a big piece of the ‘life’ in me.
Well after a relatively uneventful afternoon, working from home and trying to ward off an occasional headache, I got an inbound phone call from the doc at Vandy. He told me that the reason he had yet to get back with me was that their Pathologists were not completely satisfied with the reading of my appendix tissue slides. They requested that Piedmont here in Atlanta mail up the entire block (specimen) so that they could re-cut their own new slides, and run some additional stains (tests on the cell patterns).
More specifically, my original path report had noted that the Ki-67 protein had a proliferative rate of 90%. This simply means that the rate at which the cancer cells are replicating themselves is very fast. There is a rare form of AGGRESSIVE Lymphoma (vs. my supposed type, which is an INTERMEDIATE grade) called Burkitt’s Lymphoma that has effectively a 100% proliferative rate. The cells themselves are the same large B-cells. If mine is this rare type, it would require more aggressive and potent chemo – not R-CHOP, per se. Hmmm.
The Vandy doctor then said, “Ok, I need to scare you now. You need to know there is a very high co-existence between HIV and Burkitt’s Lymphoma. Many people who have HIV get Burkitt’s, but having Burkitt’s does not necessarily cause HIV. Are you at risk for having HIV?” Once I clarified with him what those risks are (blood transfusions, sex with an infected partner, intravenous drug use), he deemed it highly unlikely that I would have HIV. In fact, he told me to ‘put it out of my mind, as it would be highly unlikely’. But it was highly unlikely that a healthy 31-year old would get cancer, so while I put it out of my mind, I’ll be honest--- it’s just hiding behind some other part of my brain, still there.
Having broken the ‘no-google’ rule yet again, I’ve since learned that Burkitt’s is either Endemic (common to children in Africa), or Sporadic (Europe/America). While there will be 60,000 new Lymphoma diagnoses this year in the US, only 100 (!) will be Burkitt’s. There were only 12 in Australia in all of last year. Wow, this one is pretty rare. So remember all that I said about being comforted by having one of the most common sub-types of Lymphoma? That may be soon put to the test!
One final piece of info that plays into this Burkitt’s Lymphoma possibility. Well, three pieces, really: (1) it most commonly occurs in young males and adolescents; (2) it most commonly presents in the abdomen; and (3) it most commonly exists OUTSIDE the lymph nodes. You guessed it. All three of those apply to me.
So while I’m certainly going to wait until the pathology confirms or denies the existence of this rare, very aggressive form of cancer called Burkitt’s Lymphoma, I can’t help but think a shift may be happening here. The doctor told me NOT to start R-CHOP until we find out. R-CHOP would not be strong enough to knock out Burkitt’s. Great thought, eh? No topical cream on this one.
More to come… the next few days could get interesting. I trust you are doing well and I cannot thank you enough for being a part of my life at this time.
