I told MJ not to expect this doc to have answers to all the questions. I know WFBH has a cool new cancer center, but I don’t think anyone there specializes in this rare form of leukemia. So, I asked her to temper her expectations for now and be aware that her anger and pain over this diagnosis may be driving her obsessive inquisitiveness. (Those aren’t the exact words I used, but you get the point.)
On my way in to work I decided to dedicate the day to learning as much as possible about LGLL to help answer some of the questions myself. So, here I am at work pouring over online documents and attempting to understand all this scholarly lingo about LGLL.
At 10:15 I got a thumbs up and good luck text from Alex. It’s fun being able to share all this crazy cellular lingo with him because he actually understands it. When I told him about the polymerase chain reaction test for receptor rearrangement he responded with “YUP. PCR yields a fuck load of stuff.” Oddly enough, I always thought ‘fuck load’ was one word, so I learned two things.
Logan and Christa texted me around 2:00 with a pic of Logan drinking a beer after using his fish bottle opener. What a beer snob he has become and I’m proud of him! Maybe I can turn him to the dark side of wine someday. “Logan, I am your father and you don’t know the power of the dark side. Join me and we will rule the galaxy of alcoholic beverages together!”
Christa shared with me that her dad has just started chemo for metastatic cancer. Holy shit! Any kind of cancer with ‘meta’ in the name is bad news. I hope to hear more from her about his journey soon.
Much later that day...
The WFBH Comprehensive Cancer Center is a concrete and glass, 10 story building dedicated to the treatment, research and development and cure for cancers of all sorts. It's facade is gently curving, sort of like a woman's breast. Maybe that's where the designers got the inspiration since breast cancer is such a pervasive malady among women. I'm not sure how much of the building is dedicated to breast cancer but the entire third floor of the cancer center is dedicated to hematology and oncology.
Upon arrival at the clinic we had to take a number, A222 to be exact. There were patients currently being checked in or out at the 10 check-in/check-out stations, each a small private office where a clerk sat behind a computer taking and giving information. Obviously this place is organized to see as many patients as possible in an efficient manner. It's sort of a cancer care factory. It's also rated as the best cancer care center in NC in some poll; I can't remember which. We didn't have to wait but about 12 minutes before we were called to check in. The programmed announcement came over the speakers.
"Now serving ticket number A222 at station 2."
Apparently it was a day for twos. My heart rate and blood pressure bumped up a bit as MJ and I proceeded to the check-in room.
My first personal encounter was with Melissa Brown, a nice young lady who took all my insurance information and gave me directions for the rest of my visit there. She instructed me to hold onto my A222 in order to insure a place in line for lab work. That's why I was here, right? Right!
The visit to the lab was perfunctory and unremarkable. Right arm, two vials, done. It was a day for twos. Vital signs were next taken by yet another clinician. Yep, blood pressure up alright - 131/80. No terrible but higher than when I went to see Dr. Paschold. Apparently this place is scarier than the Derrick Davis Cancer Center. But only once. Temp normal. Pulse normal. Weight, 8 pounds higher than that morning when I weighed myself naked. Who'd have thought that clothes, shoes, an iPhone and set of keys weighs 8 pounds? Oh wait, it must have been that quad quarter pounder, 3 slices of cheese, a side of bacon with the ultra-sized french fries and bladder-buster sized cup of high fructose corn syrup masquerading as something humanly edible. NOT!
After being taken to an examining room, I was first interviewed and examined by a PA who was being shadowed by a med student. It was a day for twos. She basically took down all my history and previous diagnostic information. Novant health (Dr. P.) had sent over the lab results for the CBC and the flow cytometry but apparently failed to send the PCR test result and description, a vital piece of diagnostic information. I had a copy of the PCR result but it was in the car. WFBH will request it from Novant to complete the collection.
The PA privately briefed Dr. Ellis after my interview so when they all returned to the room where I was waiting Dr. E. was up to speed. In fact, she was way beyond the posted speed limit, meaning her opening monologue answered many of the questions Mari Jo and I had written down. This doc obviously has a lot of experience in this field and was more than happy to share it. She shot straight from the hip and answered all of our questions as if she had invented the disease herself. "I am the goddess of LGLL and lymphocytes bow before me!" Actually, she's probably a hematology goddess and may have written books about blood-borne maladies. I'll have to check with Barnes and Noble or Amazon.com to see if she is published. At this point I knew I had to take back my earlier words to MJ about Dr. E. not having the answers to all our questions. Gladly retracted and with humility!
In her opening monologue she explained that although they did not repeat the flow cytometry test and polymerase chain reaction (PCR) assay, there was no reason to question the original diagnosis of LGLL. Each of those tests represents a vital step in the diagnosis of LGLL with the latter being conclusive. The PCR assay tests for a T-cell receptor gene rearrangement that turns off the cells ability to be killed through apoptosis, a normal cell death process that keeps the numbers in check. When that receptor is rearranged, apoptosis no longer occurs so too many of those lymphocytes are present in a unit of blood.
She further explained that with both LGLL and CLL (chronic lymphocytic leukemia, the other possible diagnosis) treatments would not be offered until I became more symptomatic - recurring infections, anemia, night sweats, swollen lymph nodes, enlarged spleen, etc. At the time I start exhibiting some of those symptoms, those latter two tests would be repeated to confirm the LGLL diagnosis or determine if it is CLL instead. Each of these types of leukemia require specific targeted treatments and she wants those tests done at the WFB clinic when the time comes.
Dr. E. spoke about people living decades after being diagnosed with LGLL or CLL. But, she did not say and we did not ask at what age some of those people had been initially diagnosed with the disease. I did say she was measured, right? I'll raise a glass to living decades longer...but only if the quality of life is awesome!!
The really good news is that this type of cancer doesn't metastasize since the abnormal cells proliferate and move around in your blood stream instead of forming a solid tumor like breast cancer. I didn't ask about the biology behind that assertion and probably wouldn't have understood it.
The other good news is the chance of passing this nasty little lymphocyte orgy on to my children is 0% if it's LGLL and only 10% if it's CLL. Go forth,be fruitful and multiply! It's biblical!
So, the take-away from today's health care adventure is, I still have something bad going on in my blood but there’s not a whole hell of a lot that should be done about it until the treatment is less destructive than the disease. In other words, when the progress of the disease threatens to shorten my life expectancy and treatment has the potential to lengthen it, then treatment will be offered. If and when that time comes, I’ll decide then whether or not I want the treatments. The sword of Damocles may have been stayed somewhat but it swings nonetheless. I think the immediate fear can be dialed back a bit and I can get on with my life. It looks like quarterly blood draws will be part of my future just to keep current on what my crazed lymphocytes are doing. Semi-annual visits with Dr. P. will also punctuate my health-care schedule. This could be a very long blog with long periods between posts.
After my visit today, I pondered the personalities of the two cancer docs I've seen. Dr. Paschold and Dr. Ellis are the yin and yang of blood cancer docs in Winston-Salem. They complement each other perfectly. Dr. Paschold works at a regional for-profit cancer center attached to a large hospital, has experience as a cancer survivor, is warm, affable, witty and folksy. Dr. Ellis, who is a doctor at a teaching and research hematology clinic at a leading medical school, is cool, extremely knowledgeable, measured, thorough and clinical. Dr. P. gave a warm, welcoming handshake and introduced himself to me as Gene Paschold. Dr. E. gave a firm, 'I'm in control' handshake and introduced herself as Doctor Ellis. Get the picture? Dr. P. has two (2) LGLL patients under his care while Dr. E. has 10-12 under her care, a huge difference when you consider the rare nature of this disease.
Before finishing this post, I wrote an email to my kids explaining these recent revelations and included a link to this blog.
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