New Labs

These labs were done at the request of my wellness doc, Wiggy Saunders with Robinhood Integrative Health. Pretty much a repeat of the last labs - yawn - things are holding steady.. The side bar to the right has been updated with the latest numbers. Next labs are in February with Dr. Ellis at WFBH CCC. Stay tuned!

New Labs

I went to the WFBH Hemo/Onco Lab today for some blood work ordered by Dr. Ellis in August. Getting there was somewhat of an adventure because some cops had the short section of Cloverdale Rd. between the off-ramp from US 421 and the Cancer Center parking deck entrance blocked off. So, I continued across the intersection onto Medical Center Blvd. and turned into the main parking deck for the hospital wings. Immediately I saw confusion and a long hike in my future if I parked in this deck. After going up to the third level I turned around and went back out. The parking attendant who looked at the time on my ticket must have thought I was nuts since no more than a couple of minutes had elapsed since I entered. The best part is that the first 15 minutes are free! After leaving that deck I turned back onto Medical Center Blvd. and noticed that all the police cars on Cloverdale were gone. What a difference two minutes can make! I then went into the Cancer Center parking deck, proceeded to the purple level and walked over to the Hemo/Onco lab on the third floor.

When I checked in my number was L100. I thought surely there weren't 99 people ahead of me, especially since the lab waiting area I was in was empty except for yours truly. There's a larger lab waiting area for people who have labs and consults with their physician. Since it was only 7:30 I thought I would be taken back right away - didn't happen. I saw the wonderful lab techs walking around in the lab getting their acts together for the coming rush of patients wanting to know what's going on with their blood. Lazy lymphocytes, poor platelets, nutty neutrophils or randy red blood cells, this is the place to come and get  your diagnosis, prognosis and progress report.

At 7:45 I was finally called back to the vampire station and asked my name and birth-date which I gladly gave.

"Hmmmm, we don't seem to have anything scheduled for you today Mr. Turner. What's your address?"

I gave the lab tech my address and she consulted her computer again. A few minutes later she came back and said I had two MRNs (medical record numbers) in the system with two different addresses. One of them was from my old Kernersville house. I told the lab tech that I haven't lived there in almost 10 years and she informed me that the two records would need to be merged. I concurred with that assessment and offered up my arm for the three-vial blood draw, a paltry amount compared to the 10 vials they take when the LGLL Registry gets their share. Within 2 minutes I had my bandage, purple heart and was back on my way to work. The updated lymphocyte count is shown in the panel to the right, up from last time at UVa but down slightly from my last visit here. Odd.

Someone from Dr. Ellis' office called me later the same day and left a voice message stating that although my lymphocytes were elevated my hemoglobin, platelets and neutrophils were still in or near the normal range so watch and wait continues.

Second Visit to Dr. Loughran and Updated Graphs of Blood Stuff

Mari Jo and I arrived at the Emily Couric Cancer Center at UVA early Tuesday morning, August 8. Within minutes of our arrival we were called to one of the registration desks where I was debriefed about my personal and insurance information then briefed about what to expect going forward. (Good thing I don’t wear boxers.) The nice lady at the registration desk paged Bryna Shemo, the new LGLL Registry Coordinator and Dr. Loughran’s right-hand person, to let her know we had arrived. I was given a rather thick ID badge/tracking device to clamp on my shirt lapel – no annoying plastic arm bands – which I thought was a technological leap forward. As I attached it to my shirt I wondered if someone could see exactly where I was in the building at any time. I couldn’t get the visual out of my head that I was some blinking dot on a computer generated 3-D map of the hospital. Since I’m not prone to terrorism or other acts of violence I decided this was really nothing to concern myself over.

After registration Bryna came down promptly to take us up to the lab where 10 vials of blood were drained from my right arm. Chris was the lab tech and a really cool guy. The needle stick wasn’t even noticeable but after about the 7^th vial I began to feel clammy. When Chris asked me if I was OK, I told him there was some pain at the needle site and he apologized all over himself repeatedly. It seemed that each time a vial was taken off and a new one pushed into place, there was a sharp pain at the site. I got through that without passing out and went back to the waiting area.

After a very brief wait again, a nurse came to get me to take my vitals. About the only thing that was the same as last time was my height. Thank god for small victories! Weight, up by 15 lbs. Ugh! BP, high, initially 140/93 then on a second reading, 132/90. “Wait, take it a third time and I’m sure it will be within normal limits!” I felt like saying. “Three times is a charm. Or better still, take Mari Jo’s BP on my behalf, she always has great numbers.”

The vitals nurse then took me to the examination room where I waited less than 5 minutes before Dr. Loughran entered. He explained that my lab results hadn’t arrived yet but went ahead with the physical examination. It was a relatively routine exam where he checked for swollen lymph glands, a swollen spleen and mouth ulcers, none of which he found. We had a very short discussion about my overall health and I explained to him that I was not exercising at all anymore which was vastly different than when I visited him in December, 2015. At that time I was running 5K races and doing strength training, but no more; I’m going for couch potato of the year in Lewisville! He suggested that if we had time to wait for the lab results he would review them and go over them with us. We agreed and returned to the waiting area.

In about an hour, my lab results came back so Bryna called us back to the examination room again where we reviewed them with Dr. Loughran. My WBC count decreased since my last labs, from 17,200 to 14,130 and my lymphocyte count decreased from 12,900 to 9,600. I suppose that’s somewhat good news that the total counts for both came down some but I’ve been told that the total lymphocyte count is less important than counts for neutrophils, platelets and hemoglobin. My neutrophils actually increased since last time but my platelets and hemoglobin were down slightly.

After a complete review of my lab results with Dr. Loughran, the updated diagnosis is that I have LGLL and have likely crossed the numerical threshold into chronic lymphocytic leukemia (CLL), which he predicted would likely happen when I first visited him back in November of 2015. Apparently my B cell lymphocytes are jealous of all the attention being paid them so decided to become as deranged as the T cells. T cell LGLL and B cell CLL, what a fucking alphabet soup that is! A diagnosis of LGLL requires a clonal T-cell population of greater than 500 while a diagnosis of CLL requires a clonal B-cell population of greater than 4,000. (According to Dr. Ellis at WFBH and the CLL Society, the threshold number is 5,000 clonal B cells for a CLL diagnosis.) Dr. Loughran hypothesized that most of the additional lymphocytes (as compared to last time) are B cells and through mathematics, experience and the application of arcane medical hocus-pocus, he calculated I have exceeded the 4,000 count of clonal B cells. I’m being dramatic, it’s really very simple. Here are his exact words from the notes.

“His atypical lymphocytes I am sure represent the LGL population. Clonal B-cells are in the typical lymphocyte population which now number 7320. Therefore, it is likely that he also has now developed stage 0 B-cell CLL.”

Here’s the way the math works. Normal adult blood has between 1,000 – 3,000 B cell lymphocytes per microliter. Since my typical lymphocyte count is now 7,320 and about 3,000 of those should be typical B cell lymphocytes, the remaining 4,320 must be atypical or clonal, meaning mutated (deranged?). However, using the higher 5,000 clonal B cell threshold means I have 680 additional B cell lymphocytes to go before the CLL diagnosis is rendered. There are five stages of CLL. At stages 0 and 1, no treatment is considered. At stage 2, treatment is discussed and considered. At stages 3 & 4, treatment is strongly recommended.

For the time being, I’m still on the watch and wait program meaning that treatment for either of the leukemias is not even considered. After Dr. Ellis saw these blood work results and the notes from Dr. Loughran, she scheduled me for additional blood work in early September. I also have a follow-up appointment with her in February when I will have blood work and a consult.

Below are the updated cool graphs I mentioned in the title to this blog post.

Collaboration Consternation

On January 25, 2017, after my last visit with Dr. Ellis at WFBH, I made my next follow up appointment for July 26 - it was a collaborative thing where I got to check my calendar but had to choose an open date for Dr. Ellis. I like collaboration because it’s a polysyllabic word and, in the context of the medical care system, it gives you the illusion that you are in on the decision. Within a matter of months, I was quickly and unceremoniously disabused of any illusion that my next appointment time was a collaborative effort.

On May 30, I got a notification through the WFBH patient portal that my July 26 appointment was cancelled and rescheduled for July 28. I thought, “meh, only two days later, nothing to be concerned or annoyed about”. The following day, May 31, I got another notification through the patient portal that my July 28 appointment was cancelled and moved to August 7. This was mildly annoying because I had already sent my wife an appointment request for the July 28 date through my Google calendar to which she had already responded and accepted. Even so, I changed my appointment time on my calendar and sent her an update. This appointment was still only 12 days after my original and I had no reason to complain about the timing in that regard even though I was not consulted about the time beforehand. I was (double entendre warning!) patient. On July 20 I received yet another notification through the patient portal that my appointment had been rescheduled again for October 2. This time I thought, “what the fuck is going on?” It was time for me to reassert my illusory independence and send a message back to the yahoos at WFBH Scheduling. Through the portal appointment service I cancelled the October 2 appointment. Within an hour I got a message through the portal message service from Shelley L. asking me if I wanted to reschedule my appointment with Dr. Ellis, to which I replied it had already been rescheduled three times and could I please get an explanation. Shelley L. responded by apologizing for the repeated reschedulings and explained that Dr. Ellis was no longer seeing patients on Wednesdays and that a PA was not available on August 7 so I was given the next available appointment. That is precisely the time I became very annoyed for two reasons. 1) I was not consulted about the appointment times beforehand and 2) my appointment was pushed back more than two months from its original date to the doc’s next available date as if I had never made an appointment in the first place. I never responded back to the last message from Shelley L. To my credit, I was pissed off but did not reflexively take out my frustrations on her. Don’t kill the messenger, right? The first rule of diplomacy.

Out of a need to further reassert my control of the situation I emailed Dr. Loughran’s office to see when I could get an appointment to see him again. The nice lady at the Emily Couric Cancer Center, named Jeanette, told me that he had an open date on August 8 at 8:00 a.m. That’s 8-8-8 for those of you who aren’t paying attention. Surely there must be some metaphysical significance to the 8-8-8 thing and it will reveal itself during my consult with the Wizard of Oz. Maybe some mystical portal will open and I will be transported to LGLL land where a cure has been found and everyone lives a long, healthy and productive life. Or, maybe I will be sent to LGLL purgatory where everyone is having their appointments constantly rescheduled.

Regardless of how this turns out, I feel better about the ultimate outcome and isn’t feeling better what it’s all about? If it’s not a panacea maybe it’s a placebo and I’m in the control group. Sugar pills all around!

New Labs

I just got some new lab results from my wellness doc and noticed a large spike in my lymphocyte count. (See the side panel for the historical data.) I emailed Dr. Ellis with the news to get her reaction. Her PA responded with:

"As long as your hemoglobin and platelets are still good we aren't concerned about the white cells and lymphs going up some. It is typical for them to bounce around."

In reply, I sent the PA my entire blood count history. My hemoglobin and platelets are in fact still within normal limits so anemia and bleeding out shouldn't be likely for me anytime soon. I can cross those two worries off my list.

Although my deranged lymphocytes have been given tacit approval by my hematologist to "bounce around", I want answers! The naturally curious part of me wants to know what the hell is going on inside my blood and bone marrow. This increase from 6,000 to 12,900 took place in just over 3 months. This will surely be a topic of discussion during my next appointment in July. Stay tuned.

An LGLL Facebook Group

I don't recall how I stumbled onto it but last week I discovered a Facebook support group dedicated to LGLL and its treatment. It's a pretty swell social media outlet for patients, care-givers and others interested in the malady. Because it is moderated, the chances of someone hijacking the site for nefarious purposes is slim, which is something I can't say about Facebook in general. I'm so disgusted with Mark Zukerberg and his unsuccessful, sophomoric attempts at moderating and channeling FB in a positive and constructive way that I've pretty much ceased going to my own home page. Despite my misgivings about FB in general I look forward to learning more about how people manage their daily lives in various stages of LGLL.

Dr. Ellis Visit # 4 and New Labs

Once again I spent the best part of 4 hours in the Wake Forest Baptist Health Comprehensive Cancer Center's gleaming tower of smoked glass and steel. See earlier posts for a more detailed description of this facility dedicated to the treatment and eradication of one of humanity's greatest fears and scourges, cancer. As the title of this post suggests, this was my fourth visit with Dr. Ellis, my Hemotology/Oncology high priestess to whom I pay frequent obeisance.

On January 25, 2017 I not only got three vials of blood drawn as ordered by Dr. Ellis' for her use, I got an additional seven vials drawn for the LGLL Registry at UVA Medical Center in Charlottesville, VA. Previous posts will also elucidate for readers the purpose of and my connection with the LGLL Registry.

Dr. Ellis informed me that my lymphocytes were really behaving themselves at this time as were my neutrophils, red blood cells and platelets, all very positive indicators of my continued good health. My lymphocyte count was actually lower than the two previous results and the lymphocyte percentage was lower than the four previous results. This good news must be the result of the awesome diet I'm on that has raised my blood sugar, triglycerides and cholesterol to levels higher than they have been in 3 years or more. But wait, there's more! When I got on the scale the other morning, bare-butt naked I might add, I weighed 190 pounds, which is more than I've weighed in probably 10 years or more. What the fuck is going on? Needless to say I have fallen completely off the fitness wagon and under its wheels. I was really counting of dying of some rare, cool malady but now it appears something much more common like diabetes may do me in. How boring! Where's the excitement in that? Seriously, I am excited about the good news on the LGLL front. Now if someone would please motivate me to get off my lazy ass and start exercising again I would be eternally grateful. Enough with the fitness digression.

I asked Dr. Ellis if I could go back to a schedule of getting labs and visiting her every six months instead of getting labs every quarter and seeing her every six months. She readily concurred that this was acceptable so my next appointment is July 26, 2017.