The results of the second flow cytometry and TCR-PCR tests ordered by Dr. Loughran and performed at UVA are back. Both of these tests confirm the earlier diagnosis - I have a small population of T cell large granular lymphocytes that are genetically mutated and cloning themselves instead of dying off as they normally should. In addition, I also have a small population of B cell lymphocytes that are also genetically mutated and clonal. Both of these blood cell mutations are abnormal and malignant, meaning that I do have a form of leukemia.
Because I test positive for the T cell LG lymphocyte gene mutation, I am technically classified as having T cell chronic large granular lymphocyte leukemia (LGLL). However, and in addition, I may develop B cell chronic lymphocyte leukemia (CLL) if those mutated B cells lymphocytes become more numerous. There is a numerical threshold of mutated cells above which the diagnosis becomes positive for each form of leukemia. In both cases the disease is chronic, as emphasized by the italics, and will probably be non life-threatening for the foreseeable future.
Life threatening symptoms for both are the same: severe anemia due to a low red blood cell count, recurring infections due to low neutrophil count and rheumatoid arthritis. The clinical connection between RA and leukemia is still unclear and being investigated. My neutrophil and RBC counts remain within the normal range. Since I'm not showing any of the life-threatening symptoms and my only real symptom is a higher than normal lymphocyte count, my longevity outlook is very rosy.
I will remain on a schedule of having blood draws for a CBC every three (3) months and office visits with my hematologist every six (6) months to monitor things. Depending on how my pesky lymphocytes grow my doc may choose to see me less often.
About Me
- Wayne Turner
- I was born, raised and went to school in eastern NC. Too immature at 17 to comprehend the seriousness of university life, I dropped out after two years and joined the Air Force. I spent two years of my four year military career in Germany, which I enjoyed immensely. I completed my Bachelor's Degree at Guilford College in 1985. My first career was in the computer field where I did everything short of design one. I've spent the last 30 years in the environmental field working for local governments. In December 2017 I retired from full time work. My overdeveloped sense of fairness and justice lands me on the liberal side in my political views. I think government plays a large role in social responsibility in a civilized state. I believe in the innate compassion and goodness in everyone despite the daily news reports to the contrary. My genetic predisposition for generosity in nearly all things is sometimes a source of future angst. I've been a musician and still have a deep love of music. I am naturally curious about all things especially metaphysics and science.
In the presence of the Great and Powerful Oz
If Charlottesville is the Emerald City then the Emily Couric Cancer Center at UVA is the palace where the Great Oz resides and dispenses his wisdom. Anyone planning a trip there in the immediate future is forewarned that the palace is under construction. While this shouldn't dissuade anyone from a visit to see the Great and Powerful Oz, be prepared to dodge cranes, construction materials, equipment and workers, all of which seem to have the right-of-way over patients. I'm not 100% sure but I may have overheard one woman say, "Oh, excuse me asshole for impeding your construction progress while I stroll on over for an infusion of toxic chemotherapy because I'm dying of Hodgin's Disease!" Maybe I dreamed that.
The inside of the Couric Cancer Center is not unlike the WFBH Cancer Center; maybe a few years older and in need of some structural TLC. Everyone is super friendly and the place is decorated festively in an attempt to take your mind off your malady. Thanksgiving and Christmas provide an even more festive occasion to decorate and provide visual stimulation to distract patients from the real purpose behind the visit.
Registration was easy enough. Take a number, sit and wait until your number is called, give the nice gentleman at the kiosk your insurance information, confirm your identity, confirm the purpose of your visit and then off for blood work. The wait wasn't long for either registration or the blood draw. After I was called back to Hotel Transylvania where the vampires performed their hematologic withdrawal Holly Davis appeared and introduced herself. What a nice surprise that was. She is my primary contact for the LGLL Registry and my visit to see Dr. Loughran. Holly is awesome - a young, petite brunette with dark eyes and a sparkling personality. Her smile is genuine and inviting, like she really wants to let you in her personal space and make you feel welcome. After I was down a quart, she personally escorted us to the hematology clinic on the third floor and checked me in. She did so with authority and alacrity. After Holly escorted us to the examination room we waited in eager anticipation to see the Great Oz himself. Deep breath!
After a short interview and physical exam, Dr. Loughran agreed to let us record the main part of the consult during which he reviewed my current diagnosis and his opinions on how the LGLL would progress. Those readers who know my obsessive (anal?) proclivities won't be surprised, or disappointed, to know that I also transcribed the conversation. It follows in its entirety and is nearly verbatim. I inserted parenthetical remarks for clarity where I thought it was appropriate.
Dr. Loughran: Lymphocytes are increased in reaction to viruses but if they are chronically
elevated persistently for a long time we think of chronic leukemia. The most common one is
leukemia of the B cells, so when people say CLL, chronic lymphocytic leukemia, they generally
are referring to B cells, which is 95% of cases. The other cases are probably LGL leukemia which
are either T cells or NK (natural killer) cells. In terms of the workup that you’ve done in the past,
you had this done (referring to TCR test) which was positive. So that raises a suspicion that the
T cells are clonal and it could be LGL leukemia. So this being positive, it’s suspicious it is LGL
leukemia.
This one (referring to the previous flow cytometry test) is the one done not really well
anywhere else other than maybe here; we have this special panel. The previous study was done
but it suggested two things. One that there is a clonal population of B cells as well as a small
population of LGL which probably wasn’t high enough to meet this criteria, but this is not really
very accurate. I think, based on this atypical lymphocyte (referring to the atypical lymphocyte
count from the CBC performed there at UVA), it’s kind of almost, whenever I see this this is
underestimated. LGL are atypical. So they’re probably in here (referring to atypical LGL). We’ll
take a look at this. But it is suspicious that you probably have LGL leukemia now that I have this
result back (CBC from UVA).
How do we determine the number? The normal number is… So about 10% of a person’s normal
lymphocytes are LGL and that comes out to a total number of 200 plus or minus a hundred as a
standard deviation. These are normal cells in your system. Three standard deviations above
normal is 500 so just for definition more than 500 we say is an increase. So, just to prove the
illness more than 500 LGL clonal. So, how do we figure that out?
The way we figure this out is, it’s another derived number. Let’s just say these are 6,000
(referring to absolute lymphocyte count), these are your lymphocytes. So LGL are going to be in
here. If they’re 10%, which is normal percentage, this is 600 or so, that’s a little bit higher than
normal. Generally our patients have 50%, 80%, 95% so we’re going to figure that out and get
the actual number based on the flow.
The conclusion I’m making is based on this one test that is positive; sometimes it’s a false
positive. That’s why we like to repeat it. Also in the context of your case, the flow wasn’t
definitive before so I’ll repeat this. But I’d say it’s suspicious that you probably have LGL
leukemia based on the atypical lymphocytes and this (flow test) being positive.
The next I want to do is talk about something you mentioned about our research and also
treatment options – do we treat patients all the time. The big point to emphasize is it’s a very
chronic illness. The three prominent clinical problems patients get is one is anemia, which you
really don’t have, it’s really mild if it’s… I wouldn’t even call it anemia. The second one is
neutropenia which is a low neutrophil count, which yours is totally normal. (Low neutrophil
counts result in frequent and recurrent infections.) These (neutrophils) are the white blood cells
that fight infection and we have patients without any of these cells with the disease and they
get recurrent episodes of pneumonia, skin infections, and sinus infections. The number that
turns out to be key there is as long as it’s over 500, patients are free of serious infection. In your
case it’s probably normal so you don’t have to worry about this range. The third thing is our
patients do get, not infrequently, rheumatoid arthritis. In your case, you don’t have any of
these three prominent problems. Generally I tell patients that it’s a very chronic illness, it’s
probably not going to have any impact on longevity, whatever that might be. In your case, I’m
even more confident stating that because you don’t have any significant of these three
problems. Just kind of discovered as an accident really…incidentally we call it.
So, let’s talk a little bit about our research…
Me: Before you go on, you said it won’t have any effect on my longevity. I told you that my dad
lived until he was 98. What I had heard previously was that a life expectancy…these things
don’t progress to the stage where you require treatment until maybe 10 years or so.
Dr. Loughran: Ten years was one of the first statistics we had 30 years ago or something. That’s totally changed.
Really, frankly, the only patients that die of this illness are these people I mentioned who have a neutrophil count of zero and they get a big overwhelming infection. Because it’s normal today and has been normal throughout the last five years, I don’t think it will ever go significantly low enough that you’ll ever need treatment.
Our lab, and thanks for participating with our research program... This is a rare disease. We
think there’s maybe a thousand new patients diagnosed with it every year in the United States.
It’s seen all around the world. We have the registry that allows us to collect clinical information
from patients. If you have any questions email us. We have a lab and basically we’re trying to
figure out the biology of these cells; how are they different than the normal cells. The main
point that you’ve already mentioned is they’re unlike normal cells they’re never resting; they
are always activated. We can measure in the blood the high levels of these pro-inflammatory
cytokines we call them and the reason they’re turned on or activated is also they’re not dying
like the normal cells should be doing if they respond to a virus. We’ve been looking at the
20,000 genes we all have and coming up with a network at how they all interact with one
another so it turns out that there are 15 key hubs of something we call the survival network.
These genes are abnormally turned on, they keep themselves alive all the time. The most
important one is probably in the central hub of the network which actually was a computational
model that we did in collaboration with the physics department. It’s been really very important
in validating in our lab as much as we can. But the central hub is this gene we call stat3.
Way back in 2001 we showed that it was abnormally on in all our patients. Stat3 is a
transcription factor; its job is to turn on other genes. It literally turns on probably hundreds if
not a thousand of the 20,000 genes we have. We discovered this in 2001. In 2012, we showed
the reason it was turned on in about a third of the patients is that there’s a mutation in this
gene and it’s acquired and somatic.
Me: I know what acquired means, what does somatic mean?
Dr. Loughran: Somatic means that it’s occurring only in the blood tissue in this case, not in any
of your other normal cells so it’s not inherited. So as a consequence of the disease there’s this
mutation of the stat3 occurring only in the LGL cells.
Mari Jo: This also shows that it’s not something that can be passed on?
Dr. Loughran: It’s not inherited, it’s acquired. Yeah.
So in the research we’ll be testing in the lab to see if you have the mutation or not. It doesn’t
seem to have any, right now, impact as far as we know on any feature of the disease but that’s
our research question we’re trying to figure out. Trying to connect them more often to any of
these three particular symptoms (referring to anemia, neutropenia and RA), is it associated
with response to treatment; these are all unanswered questions. We’re doing that as our
research test. That’s the reason we’re asking you to do the saliva because saliva is the source of
normal cells. We’re basically sequencing all 20,000 genes and we get sequence information
which is like four letters of the alphabet (referring to DNA molecular bases made up of guanine
(G), cytosine (C), adenine (A), thymine (T) and uracil (U)) in different orders from 100 to 200 of
these letters strung together and it’s a giant jigsaw puzzle because we have thousands or
hundreds of thousands of these little pieces and we have to put them all together. What we
found was that we compared the blood to the saliva we found one letter was changed and that
letter was stat3. That mutation actually turns this gene on even at a higher level than the other
patients where it’s already abnormally turned on.
I don’t think you’re ever going to need any treatment so I’m not really going too focus too much
on this but I’m going to let you know a category and maybe mention some drugs. We don’t use
chemotherapy for this illness. The main problem is these LGL cells, being a part of the immune
system, are too active, they’re making these poisons and they’re clonal so we need to turn
them off or suppress them, which is what these medicines are. The most common medicine we
use is methotrexate which is the most commonly used medicine for treatment of rheumatoid
arthritis. And it does work well for LGL leukemia. There are a bunch of connections we’re
seeing; you asked about the connection between RA and LGL. We don’t exactly why they’re
connected but we’re thinking that the biology would be similar in terms of that mutation
perhaps and the LGLs proliferating.
So the bottom line is that it is suspicious that you have this illness. We’ll work this (tests) up. If
you have it I just want to reassure you it’s a chronic illness and I don’t think you’re ever going to
need any treatment for it. The secondary point is that they (previous pathologist) did comment,
and we’re going to check this out too, that there was a small component of B cells that were
clonal. Now, if there’s enough of these cells there then that could classify you as B cell CLL. I
probably think if we validate that it’s probably going to be a very small proportion. It turns out
that LGL leukemia is also connected to abnormally…. So the disease involves T cells or NK cells
but the B cells are also abnormal in our patients. It’s not uncommon as we follow patients over
20 years that some of the B cells become clonal. Sometimes they actually get a disease like B
cell CLL. That’s an entirely different discussion but I don’t anticipate that there would be
enough of those cells around that we’d actually call it B cell CLL. Basically B cell CLL is the same
thing but 4,000 of these cells are B cells which would be pretty impossible that most of them
are the LGLs.
The bottom line is it’s very suspicious that you have the T cell form of LGL leukemia. We’re
going to work that up. There may a minor component of clonal B cells but it’s not the CLL
disease. The B cell CLL is a big expansion of these cells. I’m thinking there’s a small proportion.
We don’t know if it’s true; it’s suggested from the other studies (previous pathologist report).
Even if it were true though, it’s not going to be sufficient to be enough of these to be B cell CLL.
It’s just something we would watch over time with your other doctors.
Mari Jo: Is anemia or feeling fatigued usually one of the first symptoms we’d see?
Dr. Loughran: Yeah, one of the three things we mentioned. Tiredness, fatigue, shortness of breath are symptoms of anemia. Symptoms of neutropenia or consequences are basically infections and
then arthritis. Neutropenia and RA are linked together. RA is usually seen in conjunction with
neutropenia. Often times you see RA plus neutropenia but you can either of them alone.
Me: Even if I definitely have LGLL, since it’s such a chronic disease, it won’t affect my longevity.
Currently I’m being asked to have blood draws every 3 months and visits to the doctor every six
months. Is this schedule still true?
Dr. Loughran: It’s up to your doc at home. With these counts…. They go up and down but
they’re really unchanged for the last couple of years. At some point your doc may want to see
you only once a year but right now that’s a good schedule.
Me: How will the results of these tests (referring to the ones that Dr. Loughran ordered) be
communicated to me?
Dr. Loughran: Once you get all these results back going to be a week at least. They’re coming
back in 8 or 9 days right now. I’ll write a letter and a summary. Everything goes to your doc and
I’ll give him a call.
Mari Jo: Can we get a copy of that also?
Dr. Loughran: Yeah we can send you a copy. Holly can send you a copy.
Mari Jo: Not that we’re anywhere near that, when it came to blood transfusions…is there a
time line on that?
Dr. Loughran: I don’t think you’ll ever get to that point. That’s really severe anemia. He would
have like 8 or less (referring to red blood cells or hemoglobin). People vary in terms of their
transfusions needs. All those patients need to be treated and hopefully the treatment would
work so they don’t need transfusions any more.
"The Great Oz has spoken (ummm, pay no attention to that man behind the curtain!) and decreed that LGLL will not be the cause of your demise! Further, I am confident that your LGLL will never reach the stage requiring treatment much less blood transfusions."
"Holy shit Toto, we're not in Kansas anymore!"
Unlike the tin man, I did not receive a heart or emotional enlightenment. But I was also not called a clinking, clanking, clattering collection of caliginous junk. Unlike the scarecrow, I did not receive a brain or wisdom. Too bad on that count. I'll add it to my bucket list. And, unlike the cowardly lion, I did not receive courage or fortitude. If my fear was palpable, it was well hidden from outsiders anyway. However, like Dorothy, I have been awakened from a terribly disturbing dream that threatened my very existence, albeit for a short time.
Click, click, click. "There's no place like home. There's no place like home. There's no place like home!"
The inside of the Couric Cancer Center is not unlike the WFBH Cancer Center; maybe a few years older and in need of some structural TLC. Everyone is super friendly and the place is decorated festively in an attempt to take your mind off your malady. Thanksgiving and Christmas provide an even more festive occasion to decorate and provide visual stimulation to distract patients from the real purpose behind the visit.
Registration was easy enough. Take a number, sit and wait until your number is called, give the nice gentleman at the kiosk your insurance information, confirm your identity, confirm the purpose of your visit and then off for blood work. The wait wasn't long for either registration or the blood draw. After I was called back to Hotel Transylvania where the vampires performed their hematologic withdrawal Holly Davis appeared and introduced herself. What a nice surprise that was. She is my primary contact for the LGLL Registry and my visit to see Dr. Loughran. Holly is awesome - a young, petite brunette with dark eyes and a sparkling personality. Her smile is genuine and inviting, like she really wants to let you in her personal space and make you feel welcome. After I was down a quart, she personally escorted us to the hematology clinic on the third floor and checked me in. She did so with authority and alacrity. After Holly escorted us to the examination room we waited in eager anticipation to see the Great Oz himself. Deep breath!
 |
| If Dr. Loughran is Oz, Holly Davis is Glenda, the good witch. |
Dr. Loughran is warm and affable, not prone to verbosity but quite capable of explaining things in terms that are relatively easy to understand. He listens well and answers questions with a clear understanding of the underlying motive. He's definitely an introvert and I can easily picture him pouring over hematologic reports in a lab rather than interacting with patients. Regardless, his easy-going manner, incredibly deep wisdom and expansive experience with LGLL qualifies him for any honorific titles that may be bestowed upon him, including guru and wizard.
 |
| The Great and Powerful Oz, aka Dr. Thomas Loughran. |
Dr. Loughran: Lymphocytes are increased in reaction to viruses but if they are chronically
elevated persistently for a long time we think of chronic leukemia. The most common one is
leukemia of the B cells, so when people say CLL, chronic lymphocytic leukemia, they generally
are referring to B cells, which is 95% of cases. The other cases are probably LGL leukemia which
are either T cells or NK (natural killer) cells. In terms of the workup that you’ve done in the past,
you had this done (referring to TCR test) which was positive. So that raises a suspicion that the
T cells are clonal and it could be LGL leukemia. So this being positive, it’s suspicious it is LGL
leukemia.
This one (referring to the previous flow cytometry test) is the one done not really well
anywhere else other than maybe here; we have this special panel. The previous study was done
but it suggested two things. One that there is a clonal population of B cells as well as a small
population of LGL which probably wasn’t high enough to meet this criteria, but this is not really
very accurate. I think, based on this atypical lymphocyte (referring to the atypical lymphocyte
count from the CBC performed there at UVA), it’s kind of almost, whenever I see this this is
underestimated. LGL are atypical. So they’re probably in here (referring to atypical LGL). We’ll
take a look at this. But it is suspicious that you probably have LGL leukemia now that I have this
result back (CBC from UVA).
How do we determine the number? The normal number is… So about 10% of a person’s normal
lymphocytes are LGL and that comes out to a total number of 200 plus or minus a hundred as a
standard deviation. These are normal cells in your system. Three standard deviations above
normal is 500 so just for definition more than 500 we say is an increase. So, just to prove the
illness more than 500 LGL clonal. So, how do we figure that out?
The way we figure this out is, it’s another derived number. Let’s just say these are 6,000
(referring to absolute lymphocyte count), these are your lymphocytes. So LGL are going to be in
here. If they’re 10%, which is normal percentage, this is 600 or so, that’s a little bit higher than
normal. Generally our patients have 50%, 80%, 95% so we’re going to figure that out and get
the actual number based on the flow.
The conclusion I’m making is based on this one test that is positive; sometimes it’s a false
positive. That’s why we like to repeat it. Also in the context of your case, the flow wasn’t
definitive before so I’ll repeat this. But I’d say it’s suspicious that you probably have LGL
leukemia based on the atypical lymphocytes and this (flow test) being positive.
The next I want to do is talk about something you mentioned about our research and also
treatment options – do we treat patients all the time. The big point to emphasize is it’s a very
chronic illness. The three prominent clinical problems patients get is one is anemia, which you
really don’t have, it’s really mild if it’s… I wouldn’t even call it anemia. The second one is
neutropenia which is a low neutrophil count, which yours is totally normal. (Low neutrophil
counts result in frequent and recurrent infections.) These (neutrophils) are the white blood cells
that fight infection and we have patients without any of these cells with the disease and they
get recurrent episodes of pneumonia, skin infections, and sinus infections. The number that
turns out to be key there is as long as it’s over 500, patients are free of serious infection. In your
case it’s probably normal so you don’t have to worry about this range. The third thing is our
patients do get, not infrequently, rheumatoid arthritis. In your case, you don’t have any of
these three prominent problems. Generally I tell patients that it’s a very chronic illness, it’s
probably not going to have any impact on longevity, whatever that might be. In your case, I’m
even more confident stating that because you don’t have any significant of these three
problems. Just kind of discovered as an accident really…incidentally we call it.
So, let’s talk a little bit about our research…
Me: Before you go on, you said it won’t have any effect on my longevity. I told you that my dad
lived until he was 98. What I had heard previously was that a life expectancy…these things
don’t progress to the stage where you require treatment until maybe 10 years or so.
Dr. Loughran: Ten years was one of the first statistics we had 30 years ago or something. That’s totally changed.
Really, frankly, the only patients that die of this illness are these people I mentioned who have a neutrophil count of zero and they get a big overwhelming infection. Because it’s normal today and has been normal throughout the last five years, I don’t think it will ever go significantly low enough that you’ll ever need treatment.
Our lab, and thanks for participating with our research program... This is a rare disease. We
think there’s maybe a thousand new patients diagnosed with it every year in the United States.
It’s seen all around the world. We have the registry that allows us to collect clinical information
from patients. If you have any questions email us. We have a lab and basically we’re trying to
figure out the biology of these cells; how are they different than the normal cells. The main
point that you’ve already mentioned is they’re unlike normal cells they’re never resting; they
are always activated. We can measure in the blood the high levels of these pro-inflammatory
cytokines we call them and the reason they’re turned on or activated is also they’re not dying
like the normal cells should be doing if they respond to a virus. We’ve been looking at the
20,000 genes we all have and coming up with a network at how they all interact with one
another so it turns out that there are 15 key hubs of something we call the survival network.
These genes are abnormally turned on, they keep themselves alive all the time. The most
important one is probably in the central hub of the network which actually was a computational
model that we did in collaboration with the physics department. It’s been really very important
in validating in our lab as much as we can. But the central hub is this gene we call stat3.
Way back in 2001 we showed that it was abnormally on in all our patients. Stat3 is a
transcription factor; its job is to turn on other genes. It literally turns on probably hundreds if
not a thousand of the 20,000 genes we have. We discovered this in 2001. In 2012, we showed
the reason it was turned on in about a third of the patients is that there’s a mutation in this
gene and it’s acquired and somatic.
Me: I know what acquired means, what does somatic mean?
Dr. Loughran: Somatic means that it’s occurring only in the blood tissue in this case, not in any
of your other normal cells so it’s not inherited. So as a consequence of the disease there’s this
mutation of the stat3 occurring only in the LGL cells.
Mari Jo: This also shows that it’s not something that can be passed on?
Dr. Loughran: It’s not inherited, it’s acquired. Yeah.
So in the research we’ll be testing in the lab to see if you have the mutation or not. It doesn’t
seem to have any, right now, impact as far as we know on any feature of the disease but that’s
our research question we’re trying to figure out. Trying to connect them more often to any of
these three particular symptoms (referring to anemia, neutropenia and RA), is it associated
with response to treatment; these are all unanswered questions. We’re doing that as our
research test. That’s the reason we’re asking you to do the saliva because saliva is the source of
normal cells. We’re basically sequencing all 20,000 genes and we get sequence information
which is like four letters of the alphabet (referring to DNA molecular bases made up of guanine
(G), cytosine (C), adenine (A), thymine (T) and uracil (U)) in different orders from 100 to 200 of
these letters strung together and it’s a giant jigsaw puzzle because we have thousands or
hundreds of thousands of these little pieces and we have to put them all together. What we
found was that we compared the blood to the saliva we found one letter was changed and that
letter was stat3. That mutation actually turns this gene on even at a higher level than the other
patients where it’s already abnormally turned on.
I don’t think you’re ever going to need any treatment so I’m not really going too focus too much
on this but I’m going to let you know a category and maybe mention some drugs. We don’t use
chemotherapy for this illness. The main problem is these LGL cells, being a part of the immune
system, are too active, they’re making these poisons and they’re clonal so we need to turn
them off or suppress them, which is what these medicines are. The most common medicine we
use is methotrexate which is the most commonly used medicine for treatment of rheumatoid
arthritis. And it does work well for LGL leukemia. There are a bunch of connections we’re
seeing; you asked about the connection between RA and LGL. We don’t exactly why they’re
connected but we’re thinking that the biology would be similar in terms of that mutation
perhaps and the LGLs proliferating.
So the bottom line is that it is suspicious that you have this illness. We’ll work this (tests) up. If
you have it I just want to reassure you it’s a chronic illness and I don’t think you’re ever going to
need any treatment for it. The secondary point is that they (previous pathologist) did comment,
and we’re going to check this out too, that there was a small component of B cells that were
clonal. Now, if there’s enough of these cells there then that could classify you as B cell CLL. I
probably think if we validate that it’s probably going to be a very small proportion. It turns out
that LGL leukemia is also connected to abnormally…. So the disease involves T cells or NK cells
but the B cells are also abnormal in our patients. It’s not uncommon as we follow patients over
20 years that some of the B cells become clonal. Sometimes they actually get a disease like B
cell CLL. That’s an entirely different discussion but I don’t anticipate that there would be
enough of those cells around that we’d actually call it B cell CLL. Basically B cell CLL is the same
thing but 4,000 of these cells are B cells which would be pretty impossible that most of them
are the LGLs.
The bottom line is it’s very suspicious that you have the T cell form of LGL leukemia. We’re
going to work that up. There may a minor component of clonal B cells but it’s not the CLL
disease. The B cell CLL is a big expansion of these cells. I’m thinking there’s a small proportion.
We don’t know if it’s true; it’s suggested from the other studies (previous pathologist report).
Even if it were true though, it’s not going to be sufficient to be enough of these to be B cell CLL.
It’s just something we would watch over time with your other doctors.
Mari Jo: Is anemia or feeling fatigued usually one of the first symptoms we’d see?
Dr. Loughran: Yeah, one of the three things we mentioned. Tiredness, fatigue, shortness of breath are symptoms of anemia. Symptoms of neutropenia or consequences are basically infections and
then arthritis. Neutropenia and RA are linked together. RA is usually seen in conjunction with
neutropenia. Often times you see RA plus neutropenia but you can either of them alone.
Me: Even if I definitely have LGLL, since it’s such a chronic disease, it won’t affect my longevity.
Currently I’m being asked to have blood draws every 3 months and visits to the doctor every six
months. Is this schedule still true?
Dr. Loughran: It’s up to your doc at home. With these counts…. They go up and down but
they’re really unchanged for the last couple of years. At some point your doc may want to see
you only once a year but right now that’s a good schedule.
Me: How will the results of these tests (referring to the ones that Dr. Loughran ordered) be
communicated to me?
Dr. Loughran: Once you get all these results back going to be a week at least. They’re coming
back in 8 or 9 days right now. I’ll write a letter and a summary. Everything goes to your doc and
I’ll give him a call.
Mari Jo: Can we get a copy of that also?
Dr. Loughran: Yeah we can send you a copy. Holly can send you a copy.
Mari Jo: Not that we’re anywhere near that, when it came to blood transfusions…is there a
time line on that?
Dr. Loughran: I don’t think you’ll ever get to that point. That’s really severe anemia. He would
have like 8 or less (referring to red blood cells or hemoglobin). People vary in terms of their
transfusions needs. All those patients need to be treated and hopefully the treatment would
work so they don’t need transfusions any more.
"The Great Oz has spoken (ummm, pay no attention to that man behind the curtain!) and decreed that LGLL will not be the cause of your demise! Further, I am confident that your LGLL will never reach the stage requiring treatment much less blood transfusions."
"Holy shit Toto, we're not in Kansas anymore!"
Unlike the tin man, I did not receive a heart or emotional enlightenment. But I was also not called a clinking, clanking, clattering collection of caliginous junk. Unlike the scarecrow, I did not receive a brain or wisdom. Too bad on that count. I'll add it to my bucket list. And, unlike the cowardly lion, I did not receive courage or fortitude. If my fear was palpable, it was well hidden from outsiders anyway. However, like Dorothy, I have been awakened from a terribly disturbing dream that threatened my very existence, albeit for a short time.
Click, click, click. "There's no place like home. There's no place like home. There's no place like home!"
Follow the yellow brick road
The yellow brick road is far more commercialized than I remember in the movie, The Wizard of Oz. Little did I know it was multi-lane and used by buses, trucks and every other sort of motorized conveyance known to munchkin and man. Our own conveyance cast long shadows as we attempted to outrun the sun's slow descent behind us. There were also some beautiful landscapes to be seen on each side of the road with occasional glimpses through leafless trees of a waxing gibbous moon rising languorously over the Blue Ridge mountains.
And, it was most notable for some of the lowest freakin' gas prices I've seen in decades as well as the biggest Panera Bread I've ever seen in my entire life! The gas prices were so low that I felt a fleeting pang of guilt for depriving an oil robber baron of an extra cruise on the Riviera on my dime. The Panera was so big, we had to drop bread crumbs, a la Hansel and Gretel, to find our way out.
Most importantly, the yellow brick road was the jumping off point for two of our nation's most famous scenic by-ways, the Blue Ridge Parkway and the Shenandoah Skyline Drive. If you have never traveled on either of these roads, your life is incomplete and you must add it to your own bucket list. Drive either of them anytime but they are most beautiful during the fall for obvious reasons. Be warned, the speed limit is 35 - 45 MPH on the entire length of both routes and leaf peepers have the right-of-way.
Wait! That was second most important! Of uber importance was the presence of one of our favorite Virginia wineries, Veritas. We discovered this winery about 7 years ago while on a (cough, cough) business trip. Their motto is in vino veritas, which is latin for in wine there is truth. Oh yeah, drink enough of it and the truth is sure to come out! The extremely warm and intimate tasting room is focused around genuine leather furniture, large wooden tables and a gorgeous stone, wood-burning fireplace on one end. This place is idyllic for wine lovers, or lovers of any stripe for that matter. In fact, the whole state of Virginia is for lovers according to their billboards and license plates.
At the end of the day, as we approached the mysterious land of Oz with wary minds and hopeful hearts, we were rewarded with not a bunch of somnolence-inducing flowers but a somnolence-inducing Homewood Suites by Hilton. Thank you Conrad, et al! This was one of the nicest Hilton properties I have ever stayed in, but I'll save the rest of my glowing remarks for a TripAdvisor review. I slept like a rock, Mari Jo, not so much. How could anyone sleep knowing we were going to gain audience with the great Oz the next day?
The following morning we were greeted by a beautiful sunrise over the Blue Ridge Mountains from our hotel room. What a way to start the day! After a nice warm breakfast in the lobby of our hotel, we packed our bags and were truly off to see the Wizard.
We're off to see the Wizard...
Like the scarecrow, I lack the intelligence to fully comprehend the nature of my malady and what it holds in store as it progresses. Like the tin man, I lack the heart to emotionally prepare myself for the future. And like the cowardly lion, I undertake this odyssey and min-odyssey to UVA with no small amount of trepidation and foreboding.
I never realized, after watching the Wizard of Oz so many times over decades, that, for me, the Emerald City lies in Charlottesville, VA. This morning, Monday, November 23, 2015, Mari Jo and I embark on the Yellow Brick Road, more formally known as Interstate 81 through the Shenandoah Valley, to visit the Great Oz of LGLL. The Great Oz has a name, Dr. Thomas P. Loughran, who, without flames, smoke, curtains and other fanfare, rules the LGLL world from on high at the Emily Couric Cancer Center. Through him, I hope to find the wisdom, the heart and the courage to better prepare myself for the next 10+ years of my life as an LGLL pilgrim.
I never realized, after watching the Wizard of Oz so many times over decades, that, for me, the Emerald City lies in Charlottesville, VA. This morning, Monday, November 23, 2015, Mari Jo and I embark on the Yellow Brick Road, more formally known as Interstate 81 through the Shenandoah Valley, to visit the Great Oz of LGLL. The Great Oz has a name, Dr. Thomas P. Loughran, who, without flames, smoke, curtains and other fanfare, rules the LGLL world from on high at the Emily Couric Cancer Center. Through him, I hope to find the wisdom, the heart and the courage to better prepare myself for the next 10+ years of my life as an LGLL pilgrim.
Health Care Economics: The Genesis of Physician Assisted Suicide
When's the last time you went into a store to buy something you really needed and proceeded to the check out not knowing how much it would cost until after you completed the purchase? More generally, when do you acquire a good or service without knowing the actual cost until after you've acquired it, also knowing in advance that there are no refunds or exchanges on the good or service? This real-world economic scenario is a mash-up of caveat emptor and que sera sera that would make drinking partners of John Keynes and Karl Marx.
The proverbial 'black box' formed by the confluence of the health care industry and the health insurance industry is the source of some of the most vexing purchase dilemmas one will ever face. The dearth of accessible information about the costs of diagnostic tests, lab work, hospital services and physician services related to health care is appalling, until after you've received the bills; at which time the bill itself is usually appalling. The time consumed attempting to discover that information is directly proportional to its importance and inversely proportional to its availability. My goal is to change this and in so doing my blog has another reason to exist. Maybe, in the not-so-distant future, some poor schmuck, when faced with the realities of dealing with medical costs and insurance, will stumble across my blog and shout "Eureka!" In some of the most extremely morbid cases, "Eureka!" may be followed by "holy shit!!", a self-inflicted fatal gunshot and a thud.
During my upcoming appointment with Dr. Loughran at UVA, I will have several diagnostic tests performed on my blood, two of which are very expensive, Flow Cytometry and Polymerase Chain Reaction (PCR). They are both important to determine exactly what type of leukemia I have. The flow cytometry test typically runs around $3,000 and the PCR around $750, according to informed sources and my own experiences. Since I am not obscenely wealthy I consider it prudent to know how much of the costs of all these services I will be responsible for paying out of pocket and how much insurance will cover before I go to this appointment. In addition to the costs for the blood tests, there will be facility charges from the UVA Medical Center and professional charges from Dr. Loughran. I have been informed that multiple claims will be filed against my insurance by several service providers.
Since the UVA Medical Center and Dr. Loughran are in-network providers under my Blue Cross Blue Shield (BCBS) health insurance plan, it is likely that a portion of the costs of all these services will be covered. My previous experience having some of these same services performed previously in July by two other in-network providers also gives me some intuition about what my share of the total costs may be. However, there are a couple of twists that muddy the waters. For one, I never received a bill from the provider that did the expensive flow cytometry test nor did I get an explanation of benefits (EOB) from BCBS showing that a claim had been filed for it. I'm not about to kick that sleeping dog and have it bite me in the ass! Caveat venditor suckas!! Second, this visit to UVA is sort of a 'second opinion' and I'm not sure if the services will be covered at the same level as they were previously. What if BCBS sends me an EOB stating that the tests were recently performed, not medically necessary and therefore the claim is denied? Under that scenario, I would be stuck with the entire bill. Given these unknowns, I set out to discover what my potential out-of-pocket costs would be for the trip to UVA. Trying to get a straight answer on exactly how much I will have to pay out-of-pocket is the portal to the black box, not unlike the entrance to hell in Dante's Inferno. "Abandon hope, all ye who enter here."
My first call was to BCBS to determine the likelihood of my worst case claim-denied scenario. Can I get a straight answer from BCBS about whether they would do this? No! In fact, when you make a call to discuss benefits or future claims, the last thing you hear from the recorded voice prior to being connected to a representative is, "Any information about benefits and eligibility provided to you during this call does not guarantee payment. Decisions about payment will be made when the claim is reviewed." Despite the specificity of the question, including providing medical procedure, current procedural terminology(CPT) codes, facility names, etc., BCBS has a blanket disclaimer that absolves them from any responsibility for paying a claim based on the conversation you have with one of their representatives. The most hopeful answer I got was "If the procedure is medically necessary as determined by your physician, then the claim should be paid based on your insurance plan's benefits." But, as the BCBS representative admitted, it all depends on how the provider's insurance and billing office codes the claim. When I asked the BCBS representative how should they code it for the particular test I was describing, she dissembled and said it is up to the provider's office. Cynically speaking, I've thought many times that provider's will code procedures to maximize their profit, which many times means insurance pays less and the patient pays more.
Next, and with no small amount of trepidation (plus the help of a BCBS insider) I did a Google search for the CPT codes for flow cytometry and voila!, I got a very useful hit that listed exactly what I needed to know. As it turns out, there are multiple CPT codes for the test, two of which are for the technical part of the test and the others for the pathologist's interpretation of the test results. For you hard-core data junkies here are the procedure codes and what they each mean.
88184 - Flow cytometry, cell surface, cytoplasmic, or nuclear marker, technical component only; first marker
88185 - Flow cytometry, cytoplasmic, or nuclear marker, technical component only; each additional marker (List separately in addition to code for first marker)
88187 - Flow cytometry, interpretation; 2 - 8 markers
88188 - Flow cytometry, interpretation; 9 - 15 markers
88189 - Flow cytometry, interpretation; 16 or more markers
With my newfound wisdom, I referred to my EOB for the flow cytometry performed back in July and it showed a 88189 code on the claim. This means the pathologist interpreted 16 or more markers so the actual technical component of the test was for at least 16 markers. This was an exciting discovery, in a perverted sort of way. I made an assumption that my future flow test would be a combination of 88184, 88185 X 15 and 88189.
I next called the UVA Medical Center to ask how much the flow cytometry test would cost using the CPT codes I had discovered. This actually produced some intelligible results! The very nice lady, Laura, at the UVA Financial Assistance Office took down the information and said she would call me back with the cost. She also took my insurance information and said she could give me an expected out-of-pocket amount for the test. When she called back later in the day I was pleasantly surprised at the level of cost detail.
88184 = $242
88185 X 15 = $167 X 15 = $2,505
88189 = $260
Total = $3,007
Then, based on my insurance benefits and current remaining deductible, she came up with the following estimate:
Billed amount for the flow test = $3,007
BCBS allowed amount for test = $1,567
Remaining deductible = $288 (after which BCBCS will pick up 80% of costs
My out-of-pocket cost for flow = $288 + (0.2 X (1,567 - 288)) = $544.
This isn't as bad as I imagined but it's not like I have $544 laying about the house either. Throw in some other costs for more tests, facility and physician at 20% on top of that and I could easily be looking at nearly a grand for this visit, not including travel costs; none of which can be written off on taxes unless you spend at least 7.5% of your adjusted gross income on medical care. I don't think we're there for tax year 2015. The tax man taketh and the tax man taketh more!
The black box isn't as scary as it once was but I'll reserve final judgement after I receive the actual bills and EOBs from BCBS. Stay tuned!
The proverbial 'black box' formed by the confluence of the health care industry and the health insurance industry is the source of some of the most vexing purchase dilemmas one will ever face. The dearth of accessible information about the costs of diagnostic tests, lab work, hospital services and physician services related to health care is appalling, until after you've received the bills; at which time the bill itself is usually appalling. The time consumed attempting to discover that information is directly proportional to its importance and inversely proportional to its availability. My goal is to change this and in so doing my blog has another reason to exist. Maybe, in the not-so-distant future, some poor schmuck, when faced with the realities of dealing with medical costs and insurance, will stumble across my blog and shout "Eureka!" In some of the most extremely morbid cases, "Eureka!" may be followed by "holy shit!!", a self-inflicted fatal gunshot and a thud.
During my upcoming appointment with Dr. Loughran at UVA, I will have several diagnostic tests performed on my blood, two of which are very expensive, Flow Cytometry and Polymerase Chain Reaction (PCR). They are both important to determine exactly what type of leukemia I have. The flow cytometry test typically runs around $3,000 and the PCR around $750, according to informed sources and my own experiences. Since I am not obscenely wealthy I consider it prudent to know how much of the costs of all these services I will be responsible for paying out of pocket and how much insurance will cover before I go to this appointment. In addition to the costs for the blood tests, there will be facility charges from the UVA Medical Center and professional charges from Dr. Loughran. I have been informed that multiple claims will be filed against my insurance by several service providers.
Since the UVA Medical Center and Dr. Loughran are in-network providers under my Blue Cross Blue Shield (BCBS) health insurance plan, it is likely that a portion of the costs of all these services will be covered. My previous experience having some of these same services performed previously in July by two other in-network providers also gives me some intuition about what my share of the total costs may be. However, there are a couple of twists that muddy the waters. For one, I never received a bill from the provider that did the expensive flow cytometry test nor did I get an explanation of benefits (EOB) from BCBS showing that a claim had been filed for it. I'm not about to kick that sleeping dog and have it bite me in the ass! Caveat venditor suckas!! Second, this visit to UVA is sort of a 'second opinion' and I'm not sure if the services will be covered at the same level as they were previously. What if BCBS sends me an EOB stating that the tests were recently performed, not medically necessary and therefore the claim is denied? Under that scenario, I would be stuck with the entire bill. Given these unknowns, I set out to discover what my potential out-of-pocket costs would be for the trip to UVA. Trying to get a straight answer on exactly how much I will have to pay out-of-pocket is the portal to the black box, not unlike the entrance to hell in Dante's Inferno. "Abandon hope, all ye who enter here."
My first call was to BCBS to determine the likelihood of my worst case claim-denied scenario. Can I get a straight answer from BCBS about whether they would do this? No! In fact, when you make a call to discuss benefits or future claims, the last thing you hear from the recorded voice prior to being connected to a representative is, "Any information about benefits and eligibility provided to you during this call does not guarantee payment. Decisions about payment will be made when the claim is reviewed." Despite the specificity of the question, including providing medical procedure, current procedural terminology(CPT) codes, facility names, etc., BCBS has a blanket disclaimer that absolves them from any responsibility for paying a claim based on the conversation you have with one of their representatives. The most hopeful answer I got was "If the procedure is medically necessary as determined by your physician, then the claim should be paid based on your insurance plan's benefits." But, as the BCBS representative admitted, it all depends on how the provider's insurance and billing office codes the claim. When I asked the BCBS representative how should they code it for the particular test I was describing, she dissembled and said it is up to the provider's office. Cynically speaking, I've thought many times that provider's will code procedures to maximize their profit, which many times means insurance pays less and the patient pays more.
Next, and with no small amount of trepidation (plus the help of a BCBS insider) I did a Google search for the CPT codes for flow cytometry and voila!, I got a very useful hit that listed exactly what I needed to know. As it turns out, there are multiple CPT codes for the test, two of which are for the technical part of the test and the others for the pathologist's interpretation of the test results. For you hard-core data junkies here are the procedure codes and what they each mean.
88184 - Flow cytometry, cell surface, cytoplasmic, or nuclear marker, technical component only; first marker
88185 - Flow cytometry, cytoplasmic, or nuclear marker, technical component only; each additional marker (List separately in addition to code for first marker)
88187 - Flow cytometry, interpretation; 2 - 8 markers
88188 - Flow cytometry, interpretation; 9 - 15 markers
88189 - Flow cytometry, interpretation; 16 or more markers
With my newfound wisdom, I referred to my EOB for the flow cytometry performed back in July and it showed a 88189 code on the claim. This means the pathologist interpreted 16 or more markers so the actual technical component of the test was for at least 16 markers. This was an exciting discovery, in a perverted sort of way. I made an assumption that my future flow test would be a combination of 88184, 88185 X 15 and 88189.
I next called the UVA Medical Center to ask how much the flow cytometry test would cost using the CPT codes I had discovered. This actually produced some intelligible results! The very nice lady, Laura, at the UVA Financial Assistance Office took down the information and said she would call me back with the cost. She also took my insurance information and said she could give me an expected out-of-pocket amount for the test. When she called back later in the day I was pleasantly surprised at the level of cost detail.
88184 = $242
88185 X 15 = $167 X 15 = $2,505
88189 = $260
Total = $3,007
Then, based on my insurance benefits and current remaining deductible, she came up with the following estimate:
Billed amount for the flow test = $3,007
BCBS allowed amount for test = $1,567
Remaining deductible = $288 (after which BCBCS will pick up 80% of costs
My out-of-pocket cost for flow = $288 + (0.2 X (1,567 - 288)) = $544.
This isn't as bad as I imagined but it's not like I have $544 laying about the house either. Throw in some other costs for more tests, facility and physician at 20% on top of that and I could easily be looking at nearly a grand for this visit, not including travel costs; none of which can be written off on taxes unless you spend at least 7.5% of your adjusted gross income on medical care. I don't think we're there for tax year 2015. The tax man taketh and the tax man taketh more!
The black box isn't as scary as it once was but I'll reserve final judgement after I receive the actual bills and EOBs from BCBS. Stay tuned!
New Labs, Cool Graphs and a New Search Begins
On Monday, October 19 I had blood drawn at the Lewisville WFBH clinic. I was also supposed to have a complete physical with Dr. Sherafsaleh but that was a disappointing experience on both a personal and professional level. Without going into all the details, this physician/patient relationship is not going to work; I'm pulling the plug. In fact, I've already begun a search for another physician in the WFBH system. I may as well be searching for the holy grail while riding a turtle. It seems every request for an appointment with a WFBH physician you've never seen before is routed through the main appointment call center. If that isn't challenge enough, most well established physicians are already booked up with patients so only the lackeys and most recent med school graduates are available. I really think that was the case with Dr. S. so I'll go back to the proverbial drawing board on that front.
My lab results actually came back the same day as my appointment so I updated my lymphocyte counts to reflect the new data. (See the side panel to the right for my historical lymphocyte counts.) Apparently WFBH does not farm out their lab work to a third party like Quest Diagnostics or LabCorp. Why should they? They're a freakin' medical school and probably have lots of first year med students doing the analyses, not unlike garment factory workers in Bangladesh.
It seems my lymphs are holding steady for the last 3 months after zooming from below 2000 to the 5000 level over the last 2 years. Since Dr. Ellis is the ordering physician for the CBC, the results were posted by her office along with some other interesting labs. Being an analytical and naturally curious person, I decided to create graphs of some of the blood components they examine. Each is the number found per micro-liter of peripheral blood.
Here's a brief recap of what each of these blood components do to keep you healthy.
Lymphocytes are a key part of your adaptive immune system. They identify new and old threats to your health in the form of infectious organisms and mount a full scale offensive to wipe them out. Additionally, they create a form of 'memory cell' that allows them to react more quickly to the same infection the next time. Hence, the name adaptive immune system.
White blood cells are the infection killers. These cells are called upon by the lymphocytes to seek out and destroy infections in your body. The can actually travel to the site of infection so they proliferate in the blood quickly when something unknown enters. That's why a high WBC count indicates an infection is present.
Red blood cells are always present in large numbers in the blood and make up the largest fraction of it. Note the magnitude of the numbers on the graph compared to other components. An important task of the red blood cells is to carry hemoglobin throughout the body.
Hemoglobin is the oxygen carrying component of blood and is attached to the red blood cells. It's rich in iron which bonds readily to oxygen thus making it a perfect carrier of that important element. Low hemoglobin means low oxygen and results in anemia, a wonderful little symptom of LGLL to look forward to.
Platelets are what helps your blood to form clots to prevent bleeding out. Low platelets equals hemophilia equals don't cut or poke yourself with sharp objects.
OK readers, the hematology lesson is over for today so we can all go back to our day jobs, whatever they are. Wait! Some readers may be government workers like me so never mind.
My lab results actually came back the same day as my appointment so I updated my lymphocyte counts to reflect the new data. (See the side panel to the right for my historical lymphocyte counts.) Apparently WFBH does not farm out their lab work to a third party like Quest Diagnostics or LabCorp. Why should they? They're a freakin' medical school and probably have lots of first year med students doing the analyses, not unlike garment factory workers in Bangladesh.
It seems my lymphs are holding steady for the last 3 months after zooming from below 2000 to the 5000 level over the last 2 years. Since Dr. Ellis is the ordering physician for the CBC, the results were posted by her office along with some other interesting labs. Being an analytical and naturally curious person, I decided to create graphs of some of the blood components they examine. Each is the number found per micro-liter of peripheral blood.
Lymphocytes
White Blood Cells
Red Blood Cells
Hemoglobin
Platelets
Here's a brief recap of what each of these blood components do to keep you healthy.
Lymphocytes are a key part of your adaptive immune system. They identify new and old threats to your health in the form of infectious organisms and mount a full scale offensive to wipe them out. Additionally, they create a form of 'memory cell' that allows them to react more quickly to the same infection the next time. Hence, the name adaptive immune system.
White blood cells are the infection killers. These cells are called upon by the lymphocytes to seek out and destroy infections in your body. The can actually travel to the site of infection so they proliferate in the blood quickly when something unknown enters. That's why a high WBC count indicates an infection is present.
Red blood cells are always present in large numbers in the blood and make up the largest fraction of it. Note the magnitude of the numbers on the graph compared to other components. An important task of the red blood cells is to carry hemoglobin throughout the body.
Hemoglobin is the oxygen carrying component of blood and is attached to the red blood cells. It's rich in iron which bonds readily to oxygen thus making it a perfect carrier of that important element. Low hemoglobin means low oxygen and results in anemia, a wonderful little symptom of LGLL to look forward to.
Platelets are what helps your blood to form clots to prevent bleeding out. Low platelets equals hemophilia equals don't cut or poke yourself with sharp objects.
OK readers, the hematology lesson is over for today so we can all go back to our day jobs, whatever they are. Wait! Some readers may be government workers like me so never mind.
Better living through chemicals?
Pick out the real chemical molecule from this group of four.
1) Butylpentahydroxyphenolmercuric monosilicate
2) Methylethylketonuric acetate
3) Epigallocatechin gallate
4) Polyurinalporcelainic hypochlorite
Queue the Jeopardy music.
I should have been a chemist but my son Alex is playing that role admirably. In fact, he's a biochemist, twice the science wrapped up in one word. He's the real deal. I simply love stringing together prefixes, roots and suffixes of chemical words to arrive at something impossible to pronounce in one breath, implausible to imagine but possibly already synthesized in some sinister, corporate laboratory. The irony is, most of the synthetic shit made from petrochemicals is what causes many cancers in the first place; unnatural stuff masquerading as natural stuff, at the molecular level. At the human cellular level, imagine this conversation.
"Hey, that cute little molecule over there is smokin' hot! I think I'll turn on my receptors and see if we can hook up."
"Yeah, it looks like adenosine triphosphate to me and it's sure to give you a buzz."
As implied by this imagined cellular discourse, our cells can sometimes mistakenly identify something bad for something good. A slight difference in the arrangement of the chemical elements within a molecule can make the difference between natural and unnatural, good and bad. Once an unsuspecting cell has allowed a perverted molecule to attach, it's too late; the damage is done. Under a worse case scenario, the DNA within that cell gets totally bunged up, the white cells can't whack the infected cell and then it begins dividing and multiplying in a mathematical orgy. Thus begins the journey down Avenue C.
Today I visited my wellness Doc, Weston (Wiggy) Saunders, with Robinhood Integrative Health. The purpose of the visit was to discuss my recent diagnosis of LGLL and some potentially beneficial natural supplements that may help delay the onset of some of the nastier symptoms - nastier than just having a high lymphocyte count.
One of those mystery substances listed above is taken by millions of people every day for its positive health benefits. It's a substance found abundantly in green tea leaves and when concentrated has strong anti-oxidant properties. Here's one sentence from an abstract investigating its efficacy against malignancies.
OK, time to solve the riddle. If the ridiculousness of the names of substances 1, 2 & 4 above weren't obvious, then the EGCG in the previous quote should have removed any doubt about which one is real. Yes, dear blog followers, green tea is full of epigallocatechin gallate, a catechin possessing strong anti-oxidant properties. (That's sort of double speak since a catechin, by definition, is an anti-oxidant.) It's been shown in laboratory animals, specifically the five-toed, ring-tailed Icelandic marmoset, that, taken in 5 gallon per day doses, the subject will not die of cancer.
More sublimely, there is scant published clinical evidence to support the efficacy of EGCG as a cancer prevention or treatment therapy. Apparently there is quite a bit of anecdotal evidence that causes people to drink the liquid form, found in green tea, or pop the pills of concentrated EGCG extract daily. My doc suggested today that I could take 800 - 1000 mg twice each day. Hell, it's worth a shot. I ordered some from my supplement supplier today. Maybe the next time I get blood drawn and my lymphocytes counted there will be resounding applause and acclamation at the efficacy of the polysyllabic, natural, chemical substance found in green tea leaves. Alternatively, if my lymphocyte count is through the roof, we can scatter the leaves on the floor and read what's left of my fortune.
1) Butylpentahydroxyphenolmercuric monosilicate
2) Methylethylketonuric acetate
3) Epigallocatechin gallate
4) Polyurinalporcelainic hypochlorite
Queue the Jeopardy music.
I should have been a chemist but my son Alex is playing that role admirably. In fact, he's a biochemist, twice the science wrapped up in one word. He's the real deal. I simply love stringing together prefixes, roots and suffixes of chemical words to arrive at something impossible to pronounce in one breath, implausible to imagine but possibly already synthesized in some sinister, corporate laboratory. The irony is, most of the synthetic shit made from petrochemicals is what causes many cancers in the first place; unnatural stuff masquerading as natural stuff, at the molecular level. At the human cellular level, imagine this conversation.
"Hey, that cute little molecule over there is smokin' hot! I think I'll turn on my receptors and see if we can hook up."
"Yeah, it looks like adenosine triphosphate to me and it's sure to give you a buzz."
As implied by this imagined cellular discourse, our cells can sometimes mistakenly identify something bad for something good. A slight difference in the arrangement of the chemical elements within a molecule can make the difference between natural and unnatural, good and bad. Once an unsuspecting cell has allowed a perverted molecule to attach, it's too late; the damage is done. Under a worse case scenario, the DNA within that cell gets totally bunged up, the white cells can't whack the infected cell and then it begins dividing and multiplying in a mathematical orgy. Thus begins the journey down Avenue C.
Today I visited my wellness Doc, Weston (Wiggy) Saunders, with Robinhood Integrative Health. The purpose of the visit was to discuss my recent diagnosis of LGLL and some potentially beneficial natural supplements that may help delay the onset of some of the nastier symptoms - nastier than just having a high lymphocyte count.
Much of the cancer chemopreventive properties of green tea are mediated by EGCG that induces apoptosis and promotes cell growth arrest by altering the expression of cell cycle regulatory proteins, activating killer caspases, and suppressing oncogenic transcription factors and pluripotency maintain factors.I underlined one phrase that relates very closely to what LGLL or any leukemia is about - apoptosis (natural cell death) and cell growth arrest (the malignant cells).
OK, time to solve the riddle. If the ridiculousness of the names of substances 1, 2 & 4 above weren't obvious, then the EGCG in the previous quote should have removed any doubt about which one is real. Yes, dear blog followers, green tea is full of epigallocatechin gallate, a catechin possessing strong anti-oxidant properties. (That's sort of double speak since a catechin, by definition, is an anti-oxidant.) It's been shown in laboratory animals, specifically the five-toed, ring-tailed Icelandic marmoset, that, taken in 5 gallon per day doses, the subject will not die of cancer.
More sublimely, there is scant published clinical evidence to support the efficacy of EGCG as a cancer prevention or treatment therapy. Apparently there is quite a bit of anecdotal evidence that causes people to drink the liquid form, found in green tea, or pop the pills of concentrated EGCG extract daily. My doc suggested today that I could take 800 - 1000 mg twice each day. Hell, it's worth a shot. I ordered some from my supplement supplier today. Maybe the next time I get blood drawn and my lymphocytes counted there will be resounding applause and acclamation at the efficacy of the polysyllabic, natural, chemical substance found in green tea leaves. Alternatively, if my lymphocyte count is through the roof, we can scatter the leaves on the floor and read what's left of my fortune.
Tuesday, August 18, 2015
Tonight Mari Jo and I went to a blood cancer support group. It was a small group of five people that met at the Cancer Services building on Maplewood Avenue. Up until today, I never knew the place existed although I have heard of the organization. It's full name, for this geographical iteration, is Cancer Services of Forsyth County. I'm sure every geographical location where there are large numbers of people with cancer and buildings has one.
A nice young lady named Ada was our facilitator for this session, which was my first. There were two other couples and one single lady in attendance. The first couple - husband named Peter, wife named Lorrie - were repeat attendees and she has multiple myeloma. The second couple - husband named Jeff and wife named Sonya - were also veterans of the support group meetings and he also has multiple myeloma. WTF? I'm already outnumbered and being ganged up against.
"Marshall Dillon! Marshall Dillon! Come quick! It's the Myeloma gang! They're spoilin' fer a fight and callin' out your Leukemia!"
But wait, there's one more; Mazie, the single lady who has non-Hodgkins Lymphoma. Now that sounds as nasty as my large granular lymphocyte leukemia although my malady has far more syllables which trumps everything else. I WIN!!!
I told Mari Jo that if the meeting became a depressing, woe-is-me free-for-all, I was exiting, post-haste. (Jeez, I think I may have abused hyphens again. Hopefully, hyphens don't have good attorneys.) Well, it did NOT turn into a moan-fest and everyone had an interesting story. It's not novel material but being in a room full of real-life, cancer stricken people is better than any shitty reality show on TV. No sets, no cameras, no Emmy nominations, no credit rolls, not even your guaranteed 15 minutes of fame. Just nice, but really sick, people sitting around looking for answers and finding support among others with the same shitty outlook for the rest of their lives. If misery loves company, then these meetings are veritable orgies of commiseration. No, no, no, no, no! That's not true at all. I'm simply using my literary license to invoke interest and sympathy from my readers.
There was nothing miserable about the dialogue that took place. It was all very upbeat and, dare I say, hopeful. No one was having a pity party or expecting sympathy. Everyone listened intently to everyone else's story that revolved primarily around their particular form of cancer. We introduced our care-givers, who were our spouses in two out of three cases. In addition, we each shared a bit about our personal lives. Interestingly, there are three of us who are senior athletes. Jeff is a cyclist and Lorrie and I are runners. Lorrie has run in some of the same 5K races I've run in - Mission 5K to name one. Maybe we'll run together sometime soon if I ever get my right leg fully healed from the sciatic nerve disaster it has become.
As the meeting ended I gave each of the couples and Mazie one of our social cards with our name, address, phone number and email address on it. (I call it a social card because it's not a business card and only pass it on during social events.) Overall, it was a good meeting but one question remained unanswered for all of us. What causes the night sweats as our disease progresses? That, my readers, is the subject for another post.
A nice young lady named Ada was our facilitator for this session, which was my first. There were two other couples and one single lady in attendance. The first couple - husband named Peter, wife named Lorrie - were repeat attendees and she has multiple myeloma. The second couple - husband named Jeff and wife named Sonya - were also veterans of the support group meetings and he also has multiple myeloma. WTF? I'm already outnumbered and being ganged up against.
"Marshall Dillon! Marshall Dillon! Come quick! It's the Myeloma gang! They're spoilin' fer a fight and callin' out your Leukemia!"
But wait, there's one more; Mazie, the single lady who has non-Hodgkins Lymphoma. Now that sounds as nasty as my large granular lymphocyte leukemia although my malady has far more syllables which trumps everything else. I WIN!!!
I told Mari Jo that if the meeting became a depressing, woe-is-me free-for-all, I was exiting, post-haste. (Jeez, I think I may have abused hyphens again. Hopefully, hyphens don't have good attorneys.) Well, it did NOT turn into a moan-fest and everyone had an interesting story. It's not novel material but being in a room full of real-life, cancer stricken people is better than any shitty reality show on TV. No sets, no cameras, no Emmy nominations, no credit rolls, not even your guaranteed 15 minutes of fame. Just nice, but really sick, people sitting around looking for answers and finding support among others with the same shitty outlook for the rest of their lives. If misery loves company, then these meetings are veritable orgies of commiseration. No, no, no, no, no! That's not true at all. I'm simply using my literary license to invoke interest and sympathy from my readers.
There was nothing miserable about the dialogue that took place. It was all very upbeat and, dare I say, hopeful. No one was having a pity party or expecting sympathy. Everyone listened intently to everyone else's story that revolved primarily around their particular form of cancer. We introduced our care-givers, who were our spouses in two out of three cases. In addition, we each shared a bit about our personal lives. Interestingly, there are three of us who are senior athletes. Jeff is a cyclist and Lorrie and I are runners. Lorrie has run in some of the same 5K races I've run in - Mission 5K to name one. Maybe we'll run together sometime soon if I ever get my right leg fully healed from the sciatic nerve disaster it has become.
As the meeting ended I gave each of the couples and Mazie one of our social cards with our name, address, phone number and email address on it. (I call it a social card because it's not a business card and only pass it on during social events.) Overall, it was a good meeting but one question remained unanswered for all of us. What causes the night sweats as our disease progresses? That, my readers, is the subject for another post.
Mise en place
Mise en place (mee zhan plass) is a French culinary phrase meaning 'set in place' or get things organized. I learned it when taking the online Artisan Bread Baking course from Peter Reinhart, the baking instructor at Johnson & Wales University in Charlotte. In the kitchen mise en place means get everything you need organized before you start baking or cooking. This concept is important for two reasons. First, it forces you to think about the ingredients and tools you need to complete your work. Second, it allows your work to flow smoothly without interruption or stress caused by looking for some ingredient or baking utensil you need. In the context of my blog, it means everything is in place regarding my LGLL wait and see period. The flurry of activity is over since the diagnosis a month ago.
August 14 - Completed enrollment in LGLL registry
August 19 - Update and send in retirement system beneficiary designation forms
October 19 - First quarterly labs at Lewisville Family Medicine
November 17 - First consult, labs, flow cytometry, and PCR with Dr. Loughran (LGLL guru)
January 20 - Second consult with Dr. Ellis, labs
Afterwards, the quarterly labs at Lewisville and semi-annual consults with Dr. Ellis will repeat. Time to kick back, relax and come up with some radical ideas for my bucket list.
August 14 - Completed enrollment in LGLL registry
August 19 - Update and send in retirement system beneficiary designation forms
October 19 - First quarterly labs at Lewisville Family Medicine
November 17 - First consult, labs, flow cytometry, and PCR with Dr. Loughran (LGLL guru)
January 20 - Second consult with Dr. Ellis, labs
Afterwards, the quarterly labs at Lewisville and semi-annual consults with Dr. Ellis will repeat. Time to kick back, relax and come up with some radical ideas for my bucket list.
Birthday party road trip!
My wife and sister-in-law, Ayako, planned a surprise visit to my brother's this past weekend for his birthday, which was on Friday, August 7. It was less a surprise for me because a five hour road trip to the Outer Banks of North Carolina is hard to keep a secret, especially once you get to Plymouth, where civilization comes to an abrupt halt for the remainder of the trip. (Editorial Note: I don't consider the height of tourist season on OBX to be civilized!)
On the way down, we made a very brief stop at the Red Oak brewery in Whitsett to pick up a growler of Red Oak Bavarian Lager, my favorite amber beer in the whole world. It was so amazingly fresh you could virtually hear the imported noble hops speaking Deutsche as they tumbled into growlers from the taps. This trip was starting off well! We will return soon for a brewery tour.
As we proceeded east of Rocky Mount, the skies turned gray and foreboding. By the time we got to the middle of nowhere in Tyrell County, a lot of that foreboding came down in buckets.
With Mari Jo at the wheel, I checked emails on my iPhone. There was a notification that I had received an email from someone in the WFBH system. Maybe Dr. E. had responded to my latest inquiry about my LGLL being triggered from some other malady. My mind raced as it held discourse with itself.
"Should I read it?"
" No! Don't ruin the weekend with shitty news. Just ignore it until you get back."
"But what if it's good news? That would make the weekend even better!"
"NO news is good news!"
"Bullshit! Sometimes no news means you're just not listening to the news."
"To read or not to read, that is the question."
"Good grief! Just open the fucking email and deal with it Charlie Brown, you wishy-washy, round-headed, 6 year old who never changes clothes!"
Here's the content of Dr. E.'s response to my inquiry, that I read as inspiration to Mari Jo while she drove like a bat-out-of-hell in a downpour.
-----------------------------------------------
Hello! I'm glad to hear that everything worked out with the scheduling! I will keep my eye out for the packet of information after its been scanned in. Probably the best way to get the forms here would be to either drop them off or mail them in; I'll put my address below. In terms of your clinical question, that answer would also be a "no" - there is not another cancer (or any other type of problem) that would have made you get this one. So keep working on that bucket list!
Dr. Ellis
---------------------------------------------
Yay!! It's time to dial back the fear again and get on with normal life, or normalcy as I experience it, which is pretty 'out-there' for some people. And, Dr. E. endorsed my lengthy bucket list! Oh joy!!
Despite the wind-driven rain pounding against the windshield, nothing could dampen our spirits now. We were hell bent to get to the Outer Banks. I could tell we were hell bent because Mari Jo was going 75 mph during the hardest part of the storm. She had planned to get to my brother's house by 5:30 to insure we could surprise him when he got home after our arrival. And my brother, Joe, was indeed surprised when we drove up at about 6:15 about 15 minutes after his arrival.
"Well, there goes the neighborhood for the next two and a half days! The riff-raff from Lewisville has arrived."
I jest! He was really happy to see us and Ayako had prepared a nice birthday meal of sushi and sesame chicken. Home made sushi, fresh beer, and family. That's what memories are made of. It was a very festive beginning and all credit goes to the two master-minds of the event, Mari Jo and Ayako. Kanpai!!
Saturday was a complete washout with frequent and sometimes heavy rain storms. We drove down to the Nags Head Hammock shop and goofed around there for a couple of hours. Many tourists had the same idea since frying like bacon on the beach wasn't an option. The Hammock Shop was an amazing display of everything that could be made with wood and rope, except possibly a gallows. I don't know, maybe they were hidden in some back room reserved for people who were tired of the leisurely life, or just life in general.
Saturday evening we had a great meal at a little restaurant called the Saltbox Cafe, right there on Colington Island where my brother and sister-in-law live. It's a very quaint, funky place but with a surprisingly varied menu featuring local seafood and a decent wine and beer list. The chef had done a tour in New Orleans so some of his signature dishes featured Cajun spices. On the recommendation of my sister-in-law, I ordered the crab cakes over fried tomatoes. They were super delicious. The four of us spent a leisurely evening at the Saltbox and met the chef near the end of our epicurean adventure. He was affable and genuinely interested in our opinion of the meal. I responded by telling him about our dining room wall that is festooned with signed menus from restaurants at which we have enjoyed eating. He got his answer when I asked him to sign a copy of his menu for us to add to our wall. He gladly obliged.
To top things off for the weekend, Mari Jo's cousin, Gary Obermeier, drove down from Norfolk Sunday morning to have lunch with us. He and his wife, Barbara, who is half Japanese, live in Ventura, CA. Gary periodically comes to Norfolk where he does contract work for the U. S. Navy and Coast Guard. We had lunch at another eclectic restaurant called the Blue Moon Beach Grill. It was really great seeing Gary again, one of many cool people on MJ's side of the family. All five of us made great connections and Ayako looks forward to a time when Barbara can come with Gary so the two of them can speak in the language of their ancestors.
Ayako took lots of pictures with her iPad during the visit. Below are some she took of MJ and I while on the beach Sunday morning. The ocean was angry as hell. Waves pounded the surf as if Poseidon himself was pissed off. That didn't dampen our spirits either. We weren't there to swim or even play in the surf, we were just enjoying each other's company and the time together. It's been far too long and this rekindled my desire to stay connected to family and friends as closely as possible.
While examining this beached, dead albino puffer fish just a bit too closely, Mari Jo and Ayako were reminded that the tide was coming in when a surprise wave came along and smacked them on their backsides. They shrieked like school girls and we all had a good laugh. None of us were wearing swimsuits so they suffered with wet clothes for a few hours from this side adventure.
The subject of my LGLL never came up the entire weekend. What a great respite. And, we slept! Oh joy of joys, we slept well!! I felt more refreshed and relaxed over the weekend than I've felt in weeks. It was therapeutic in so many ways. Although my 'situation' was never discussed during the visit, upon returning and seeing the really cool pix Ayako took of Mari Jo and me, I couldn't help but wax wistful with the short poem below.
On the way down, we made a very brief stop at the Red Oak brewery in Whitsett to pick up a growler of Red Oak Bavarian Lager, my favorite amber beer in the whole world. It was so amazingly fresh you could virtually hear the imported noble hops speaking Deutsche as they tumbled into growlers from the taps. This trip was starting off well! We will return soon for a brewery tour.
As we proceeded east of Rocky Mount, the skies turned gray and foreboding. By the time we got to the middle of nowhere in Tyrell County, a lot of that foreboding came down in buckets.
"We must be back in Kansas, Toto!"
"Should I read it?"
" No! Don't ruin the weekend with shitty news. Just ignore it until you get back."
"But what if it's good news? That would make the weekend even better!"
"NO news is good news!"
"Bullshit! Sometimes no news means you're just not listening to the news."
"To read or not to read, that is the question."
"Good grief! Just open the fucking email and deal with it Charlie Brown, you wishy-washy, round-headed, 6 year old who never changes clothes!"
Here's the content of Dr. E.'s response to my inquiry, that I read as inspiration to Mari Jo while she drove like a bat-out-of-hell in a downpour.
-----------------------------------------------
Hello! I'm glad to hear that everything worked out with the scheduling! I will keep my eye out for the packet of information after its been scanned in. Probably the best way to get the forms here would be to either drop them off or mail them in; I'll put my address below. In terms of your clinical question, that answer would also be a "no" - there is not another cancer (or any other type of problem) that would have made you get this one. So keep working on that bucket list!
Dr. Ellis
---------------------------------------------
Yay!! It's time to dial back the fear again and get on with normal life, or normalcy as I experience it, which is pretty 'out-there' for some people. And, Dr. E. endorsed my lengthy bucket list! Oh joy!!
Despite the wind-driven rain pounding against the windshield, nothing could dampen our spirits now. We were hell bent to get to the Outer Banks. I could tell we were hell bent because Mari Jo was going 75 mph during the hardest part of the storm. She had planned to get to my brother's house by 5:30 to insure we could surprise him when he got home after our arrival. And my brother, Joe, was indeed surprised when we drove up at about 6:15 about 15 minutes after his arrival.
"Well, there goes the neighborhood for the next two and a half days! The riff-raff from Lewisville has arrived."
I jest! He was really happy to see us and Ayako had prepared a nice birthday meal of sushi and sesame chicken. Home made sushi, fresh beer, and family. That's what memories are made of. It was a very festive beginning and all credit goes to the two master-minds of the event, Mari Jo and Ayako. Kanpai!!
Saturday was a complete washout with frequent and sometimes heavy rain storms. We drove down to the Nags Head Hammock shop and goofed around there for a couple of hours. Many tourists had the same idea since frying like bacon on the beach wasn't an option. The Hammock Shop was an amazing display of everything that could be made with wood and rope, except possibly a gallows. I don't know, maybe they were hidden in some back room reserved for people who were tired of the leisurely life, or just life in general.
Saturday evening we had a great meal at a little restaurant called the Saltbox Cafe, right there on Colington Island where my brother and sister-in-law live. It's a very quaint, funky place but with a surprisingly varied menu featuring local seafood and a decent wine and beer list. The chef had done a tour in New Orleans so some of his signature dishes featured Cajun spices. On the recommendation of my sister-in-law, I ordered the crab cakes over fried tomatoes. They were super delicious. The four of us spent a leisurely evening at the Saltbox and met the chef near the end of our epicurean adventure. He was affable and genuinely interested in our opinion of the meal. I responded by telling him about our dining room wall that is festooned with signed menus from restaurants at which we have enjoyed eating. He got his answer when I asked him to sign a copy of his menu for us to add to our wall. He gladly obliged.
To top things off for the weekend, Mari Jo's cousin, Gary Obermeier, drove down from Norfolk Sunday morning to have lunch with us. He and his wife, Barbara, who is half Japanese, live in Ventura, CA. Gary periodically comes to Norfolk where he does contract work for the U. S. Navy and Coast Guard. We had lunch at another eclectic restaurant called the Blue Moon Beach Grill. It was really great seeing Gary again, one of many cool people on MJ's side of the family. All five of us made great connections and Ayako looks forward to a time when Barbara can come with Gary so the two of them can speak in the language of their ancestors.
Ayako took lots of pictures with her iPad during the visit. Below are some she took of MJ and I while on the beach Sunday morning. The ocean was angry as hell. Waves pounded the surf as if Poseidon himself was pissed off. That didn't dampen our spirits either. We weren't there to swim or even play in the surf, we were just enjoying each other's company and the time together. It's been far too long and this rekindled my desire to stay connected to family and friends as closely as possible.
While examining this beached, dead albino puffer fish just a bit too closely, Mari Jo and Ayako were reminded that the tide was coming in when a surprise wave came along and smacked them on their backsides. They shrieked like school girls and we all had a good laugh. None of us were wearing swimsuits so they suffered with wet clothes for a few hours from this side adventure.
The subject of my LGLL never came up the entire weekend. What a great respite. And, we slept! Oh joy of joys, we slept well!! I felt more refreshed and relaxed over the weekend than I've felt in weeks. It was therapeutic in so many ways. Although my 'situation' was never discussed during the visit, upon returning and seeing the really cool pix Ayako took of Mari Jo and me, I couldn't help but wax wistful with the short poem below.
Beside a tempest surf they walked,
Two star-crossed lovers hand in hand.
Of life's ephemeral course they talked,
Like leaving footprints in the sand.
Though wind and waves will wash away
Those footprints in the sand forever,
More constant than the night and day
Are memories of life lived together.
Though wind and waves will wash away
Those footprints in the sand forever,
More constant than the night and day
Are memories of life lived together.
"To sleep perchance to Dream; aye, there's the rub"
William Shakespeare's play, Hamlet, is one of the world's most famous and enduring tragedies of all time. Even school kids know the opening line from Hamlet's soliloquy where he contemplates suicide by uttering to himself "To be or not to be, that is the question." After the opening line, Prince Hamlet goes on to introspectively assess whether ending his life to avoid all the trials and tribulations he is experiencing due to his father's untimely, questionable death is better than continuing to live as a man deeply troubled by systemic distrust about his mother and uncle who married each other within days of the King's demise.
"Whether 'tis Nobler in the mind to suffer
The Slings and Arrows of outrageous fortune
Or to take Arms against a Sea of troubles,
And by opposing end them: to die, to sleep
No more; and by a sleep, to say we end
The Heart-ache, and the thousand Natural shocks
That Flesh is heir to? 'Tis a consummation
Devoutly to be wished. To die, to sleep,
To sleep, perchance to Dream; aye, there's the rub,
For in that sleep of death, what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause."
Impatient readers might immediately assume from my introductory paragraph that I've gone off the deep end because of the seemingly macabre turn this post has taken. Ah, but don't be fooled by appearances or beginnings. For me, the applicable stanza is "To sleep, perchance to Dream; aye, there's the rub..." In his soliloquy Hamlet uses 'sleep' as a metaphor for death, but, in the context of my post, I use it in its literal sense, to describe restful, re-energizing repose. So cheer up readers, I'm not contemplating suicide or even the more euphemistic 'euthanasia' at this time, but what I wouldn't give for a good night's sleep! "Aye, but there's the rub..."
Waking up in the middle of the night to pee is not newsworthy in itself for men my age but getting back to sleep has lately presented a real challenge for me personally. Once you have been diagnosed with a malignant cancer, you're immediately given carte blanche to lie awake at nights to worry about every benign symptom that you experience.
"Geez, why am I itching? Do I have skin cancer? Is all the snot in my head due to brain cancer? I must have lung cancer, I'm coughing! My leg hurts, is that from bone cancer?"
And so it goes, on and on, ad nauseum. To call it an obsession is too clinically optimistic. It's madness of the worst kind! Meditating or counting sheep doesn't work. My mind seizes on the most bizarre and unlikely scenarios and magnifies them to extreme proportions. Maybe my ten year window of life expectancy is really only 6 months because every cell in my body has some weird, mutant DNA replicating itself to self-imposed oblivion.
From an evolutionary perspective what the hell is cancer's purpose anyway? Aren't there enough ways for us to be selected for elimination without it? Seriously, stupid people unfit for survival do stupid shit all the time that kills them, thus selecting them and their progeny for eventual elimination, just as Darwin predicted. But wait, there's more! Enter cancer, the big C. It's a disease that ups the ante by screwing directly with the genetic material where evolutionary memory is stored. Cancer doesn't give a shit how fit, smart or adaptable you are, it just whacks you to prove that death is more evolved than life. In the realm of science I'm sure those are pretty lame deductions but I'm still adding Charles Darwin to the list of people I want to meet in the afterlife.
In an attempt to curb my madness I penned (penned? WTF? typed? Whatever!) an email to Dr. E. asking her if LGLL could have been triggered from some other cancer. Here's the content of my inquiry.
------------------------------------------
Dr. Ellis,
I had a great conversation with your scheduler, Renee, and I am scheduled for my next OV with you on January 20 - labs at 8:45 and consult with you at 9:30. I have blood work scheduled to be done at the WFBH Lewisville clinic on October 19.
I've delivered a package of previous lab results (CBCs mostly) and the flow cytometery and PCR gene rearrangement assay to the WFBH clinic in Lewisville. I trust that these records will be scanned into the WFBH medical records system and be available to you. I know the PCR assay was a piece missing when I met with you previously so that should complete the puzzle re: the LGLL diagnosis.
Is there a way I could email the LGLL Registry forms to complete? If not, to whom should I deliver them in the H & O clinic?
One clinical question, if I may. We asked you if LGLL can metastasize and you answered with an unequivocal "No" because it's not a solid tumor. Is the converse possible? Could I have some other malignancy that infected my blood cells or bone marrow? I'm sure you know the fears of people with this disorder -" Jeez, what's this weird pain in my leg all about? What's this itching all about?" Repeat for any slight and possibly unrelated disorder, ad infinitum. I don't like surprises, especially life-threatening ones, if I can avoid them. My bucket list is pretty long and I expect to check off most if not all of the items before this LGLL gets crazy.
Thanks again for everything.
Wayne
----------------------------------------
Time to wait some more. Wait for an appointment. Wait for the blood test results. Wait for the doctor. Wait for the diagnosis. Wait for more appointments. Wait for a response to my email. Wait for the next exciting chapter in my LGLL Odyssey!
"Whether 'tis Nobler in the mind to suffer
The Slings and Arrows of outrageous fortune
Or to take Arms against a Sea of troubles,
And by opposing end them: to die, to sleep
No more; and by a sleep, to say we end
The Heart-ache, and the thousand Natural shocks
That Flesh is heir to? 'Tis a consummation
Devoutly to be wished. To die, to sleep,
To sleep, perchance to Dream; aye, there's the rub,
For in that sleep of death, what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause."
Impatient readers might immediately assume from my introductory paragraph that I've gone off the deep end because of the seemingly macabre turn this post has taken. Ah, but don't be fooled by appearances or beginnings. For me, the applicable stanza is "To sleep, perchance to Dream; aye, there's the rub..." In his soliloquy Hamlet uses 'sleep' as a metaphor for death, but, in the context of my post, I use it in its literal sense, to describe restful, re-energizing repose. So cheer up readers, I'm not contemplating suicide or even the more euphemistic 'euthanasia' at this time, but what I wouldn't give for a good night's sleep! "Aye, but there's the rub..."
Waking up in the middle of the night to pee is not newsworthy in itself for men my age but getting back to sleep has lately presented a real challenge for me personally. Once you have been diagnosed with a malignant cancer, you're immediately given carte blanche to lie awake at nights to worry about every benign symptom that you experience.
"Geez, why am I itching? Do I have skin cancer? Is all the snot in my head due to brain cancer? I must have lung cancer, I'm coughing! My leg hurts, is that from bone cancer?"
And so it goes, on and on, ad nauseum. To call it an obsession is too clinically optimistic. It's madness of the worst kind! Meditating or counting sheep doesn't work. My mind seizes on the most bizarre and unlikely scenarios and magnifies them to extreme proportions. Maybe my ten year window of life expectancy is really only 6 months because every cell in my body has some weird, mutant DNA replicating itself to self-imposed oblivion.
From an evolutionary perspective what the hell is cancer's purpose anyway? Aren't there enough ways for us to be selected for elimination without it? Seriously, stupid people unfit for survival do stupid shit all the time that kills them, thus selecting them and their progeny for eventual elimination, just as Darwin predicted. But wait, there's more! Enter cancer, the big C. It's a disease that ups the ante by screwing directly with the genetic material where evolutionary memory is stored. Cancer doesn't give a shit how fit, smart or adaptable you are, it just whacks you to prove that death is more evolved than life. In the realm of science I'm sure those are pretty lame deductions but I'm still adding Charles Darwin to the list of people I want to meet in the afterlife.
In an attempt to curb my madness I penned (penned? WTF? typed? Whatever!) an email to Dr. E. asking her if LGLL could have been triggered from some other cancer. Here's the content of my inquiry.
------------------------------------------
Dr. Ellis,
I had a great conversation with your scheduler, Renee, and I am scheduled for my next OV with you on January 20 - labs at 8:45 and consult with you at 9:30. I have blood work scheduled to be done at the WFBH Lewisville clinic on October 19.
I've delivered a package of previous lab results (CBCs mostly) and the flow cytometery and PCR gene rearrangement assay to the WFBH clinic in Lewisville. I trust that these records will be scanned into the WFBH medical records system and be available to you. I know the PCR assay was a piece missing when I met with you previously so that should complete the puzzle re: the LGLL diagnosis.
Is there a way I could email the LGLL Registry forms to complete? If not, to whom should I deliver them in the H & O clinic?
One clinical question, if I may. We asked you if LGLL can metastasize and you answered with an unequivocal "No" because it's not a solid tumor. Is the converse possible? Could I have some other malignancy that infected my blood cells or bone marrow? I'm sure you know the fears of people with this disorder -" Jeez, what's this weird pain in my leg all about? What's this itching all about?" Repeat for any slight and possibly unrelated disorder, ad infinitum. I don't like surprises, especially life-threatening ones, if I can avoid them. My bucket list is pretty long and I expect to check off most if not all of the items before this LGLL gets crazy.
Thanks again for everything.
Wayne
----------------------------------------
Time to wait some more. Wait for an appointment. Wait for the blood test results. Wait for the doctor. Wait for the diagnosis. Wait for more appointments. Wait for a response to my email. Wait for the next exciting chapter in my LGLL Odyssey!
We have a plan!
I visited the physician who may become my new primary care provider (PCP in medical notes lingo) on Wednesday, July 29, 2015. Dr. Golnosh Sharefsaleh, a young, attractive, astute Iranian-American physician, is with the Wake Forest Baptist Health System and a member of a multi-physician family practice located right here in beautiful downtown Lewisville. She is unassuming, warm and enjoys sharing personal stories of her own that are pertinent to the conversation. She doesn't come off as a know-it-all which is refreshing in a profession that attempts to monopolize that personal attribute.
I think it may take a couple more visits for me to fully assess my comfort level with her as my PCP, who would coordinate my general care with Dr. Wiggy (aka Weston Saunders) at Robinhood Integrative Health. My plan is to use Dr. S. to do my annual physical and someone I can go to for aches, pains, colds, flu, etc - you know, those periodic maladies that require attention but aren't life-threatening. Dr. Wiggy will continue to be my 'feel-good' doc who chases numbers to ensure my overall well-being and vitality.
I learned about Dr. S. from a large "Welcome to Our Practice" postcard from WFBH that came in the mail several months ago. The postcard said she specializes in geriatrics and I think I'm pushing that boundary. I visited the WFBH website with a video of her discussing her reason for choosing medicine and geriatrics. I was impressed by her description of how Iranian families (who aren't terrorists attempting to make a nuke to blow up the middle east or the entire world!) take care of each other, even into the later years, even unto death. I infer that they don't farm their elder family members out to elder care facilities to eat crappy, tasteless food and die a slow death among strangers and staff who could give a shit less whether you lived or died in the first place. Here's a link to the video of Dr. S.
Dr. Golnosh Sharafsaleh
I sent email inquiries last week to Holly with the UVa Medical Center (Dr. Loughran, aka the LGLL guru) and Dr. Ellis with WFBH Hematology and Oncology asking about being under their care during the asymptomatic observation period. Holly explained that Dr. Loughran would always welcome an asymptomatic patient who has been diagnosed with LGLL and that being under his care would be completely separate than being in the national LGLL registry that is administered there at UVa. I discovered that the UVa Medical Center is an in-network provider under my BCBSNC insurance plan so that's a piece of good news. No sense enriching the medical-care industrial complex anymore than I already do.
Dr. Ellis responded to my email inquiry stating that she would also take me under her care during the observation period and put me on the same kind of lab/office consult schedule that Dr. Paschold had suggested. Apparently that is the nationally accepted treatment/non-treatment regimen for LGLL patients who are asymptomatic. I would be able to get my quarterly blood draws and labs at the Lewisville Family Practice office (Dr. S.) and then my semi-annual labs and office consults with Dr. Ellis at WFBH Hematology and Oncology Center. Dr. Ellis also agreed to assist me with sending in any required paperwork and labs to join the national LGLL registry at UVa. That is the plan that Mari Jo and I discussed and agreed would be the most advantageous going forward, until treatment time comes. All bets are off when that happens. Maybe by that time Yoda will have returned from Jedi Valhalla and will use the Force to exorcise my demon lymphocytes.
In addition to using the services of Dr. Ellis and the WFBH system, we are going to schedule an appointment with Dr. L. sometime between the first quarterly lab in October and first semi-annual consult with Dr. Ellis in January 2016. We are doing this just to have an opportunity to speak to the LGLL guru and get his opinion of how this blood disorder will progress over the next several months and years. I hope my unruly lymphocytes behave when we visit the distinguished and internationally renowned LGLL guru. Conversely, maybe they should act out instead to give him an idea of just what the hell is going on inside my bone marrow and thymus. In fact, the more LGLs in my blood the lower the $/LGL for the trip up the Charlottesville. I'm sure the wonderful folks at Blue Cross that write the checks will be pleased with that accounting sleight-of-hand! My guess is that the only lab Dr. L. will do is a CBC (complete blood count) just to see what my lymphocyte and neutrophil counts are when he sees me. In the meantime, I'll be sending all of my past CBC lab results along with the flow cytometery and PCR results to the registry.
Here's the email I sent to Dr. Ellis notifying her that she had won the Turner LGLL lottery.
Dr. Ellis,
I had an outstanding visit and it was my first of many, I gather, to your clinic. All the staff there were affable, professional, courteous and helpful. My unruly LG lymphocytes approve.
My wife and I have chosen to place my future care for LGLL into your capable hands during this asymptomatic observation period and beyond. We feel that as my LGLL progresses it would be most advantageous to already have all my medical records within the WFBH system when we start talking about treatment options. We also feel WFBH will provide more cutting-edge treatment options when that time comes. Plus, I want to do my part to help pay for that spiffy new Comprehensive Cancer Center! Seriously, it is an amazing care facility and I'm sure you all enjoy all the new amenities it offers.
Should I go ahead and schedule the next lab work and office visit/lab work appointments? Three months from my first visit would be around October 21. Six months out would be around January 21. I'll schedule the quarterly lab work at my local clinic in Lewisville and the semi-annual lab work/office visit there at the WFBH H & O clinic. Is that an acceptable plan going forward?
Despite sounding slightly macabre, I look forward to seeing you again.
Wayne
I think it may take a couple more visits for me to fully assess my comfort level with her as my PCP, who would coordinate my general care with Dr. Wiggy (aka Weston Saunders) at Robinhood Integrative Health. My plan is to use Dr. S. to do my annual physical and someone I can go to for aches, pains, colds, flu, etc - you know, those periodic maladies that require attention but aren't life-threatening. Dr. Wiggy will continue to be my 'feel-good' doc who chases numbers to ensure my overall well-being and vitality.
I learned about Dr. S. from a large "Welcome to Our Practice" postcard from WFBH that came in the mail several months ago. The postcard said she specializes in geriatrics and I think I'm pushing that boundary. I visited the WFBH website with a video of her discussing her reason for choosing medicine and geriatrics. I was impressed by her description of how Iranian families (who aren't terrorists attempting to make a nuke to blow up the middle east or the entire world!) take care of each other, even into the later years, even unto death. I infer that they don't farm their elder family members out to elder care facilities to eat crappy, tasteless food and die a slow death among strangers and staff who could give a shit less whether you lived or died in the first place. Here's a link to the video of Dr. S.
Dr. Golnosh Sharafsaleh
I sent email inquiries last week to Holly with the UVa Medical Center (Dr. Loughran, aka the LGLL guru) and Dr. Ellis with WFBH Hematology and Oncology asking about being under their care during the asymptomatic observation period. Holly explained that Dr. Loughran would always welcome an asymptomatic patient who has been diagnosed with LGLL and that being under his care would be completely separate than being in the national LGLL registry that is administered there at UVa. I discovered that the UVa Medical Center is an in-network provider under my BCBSNC insurance plan so that's a piece of good news. No sense enriching the medical-care industrial complex anymore than I already do.
Dr. Ellis responded to my email inquiry stating that she would also take me under her care during the observation period and put me on the same kind of lab/office consult schedule that Dr. Paschold had suggested. Apparently that is the nationally accepted treatment/non-treatment regimen for LGLL patients who are asymptomatic. I would be able to get my quarterly blood draws and labs at the Lewisville Family Practice office (Dr. S.) and then my semi-annual labs and office consults with Dr. Ellis at WFBH Hematology and Oncology Center. Dr. Ellis also agreed to assist me with sending in any required paperwork and labs to join the national LGLL registry at UVa. That is the plan that Mari Jo and I discussed and agreed would be the most advantageous going forward, until treatment time comes. All bets are off when that happens. Maybe by that time Yoda will have returned from Jedi Valhalla and will use the Force to exorcise my demon lymphocytes.
In addition to using the services of Dr. Ellis and the WFBH system, we are going to schedule an appointment with Dr. L. sometime between the first quarterly lab in October and first semi-annual consult with Dr. Ellis in January 2016. We are doing this just to have an opportunity to speak to the LGLL guru and get his opinion of how this blood disorder will progress over the next several months and years. I hope my unruly lymphocytes behave when we visit the distinguished and internationally renowned LGLL guru. Conversely, maybe they should act out instead to give him an idea of just what the hell is going on inside my bone marrow and thymus. In fact, the more LGLs in my blood the lower the $/LGL for the trip up the Charlottesville. I'm sure the wonderful folks at Blue Cross that write the checks will be pleased with that accounting sleight-of-hand! My guess is that the only lab Dr. L. will do is a CBC (complete blood count) just to see what my lymphocyte and neutrophil counts are when he sees me. In the meantime, I'll be sending all of my past CBC lab results along with the flow cytometery and PCR results to the registry.
Here's the email I sent to Dr. Ellis notifying her that she had won the Turner LGLL lottery.
Dr. Ellis,
I had an outstanding visit and it was my first of many, I gather, to your clinic. All the staff there were affable, professional, courteous and helpful. My unruly LG lymphocytes approve.
My wife and I have chosen to place my future care for LGLL into your capable hands during this asymptomatic observation period and beyond. We feel that as my LGLL progresses it would be most advantageous to already have all my medical records within the WFBH system when we start talking about treatment options. We also feel WFBH will provide more cutting-edge treatment options when that time comes. Plus, I want to do my part to help pay for that spiffy new Comprehensive Cancer Center! Seriously, it is an amazing care facility and I'm sure you all enjoy all the new amenities it offers.
Should I go ahead and schedule the next lab work and office visit/lab work appointments? Three months from my first visit would be around October 21. Six months out would be around January 21. I'll schedule the quarterly lab work at my local clinic in Lewisville and the semi-annual lab work/office visit there at the WFBH H & O clinic. Is that an acceptable plan going forward?
Despite sounding slightly macabre, I look forward to seeing you again.
Wayne
LGLL Guru
Apparently, the national LGLL guru is Dr. Thomas P. Loughran, who performs extensive research on the malady at the University of Virginia Medical School. He is listed as a physician-scientist on the UVa Cancer Center's website and gets partial funding from the National Institutes of Health for his research. There's a link to the UVa LGLL website under the LGLL Links heading to the right of my posts. He looks like a pretty cool guy and I'll bet he and Dr. Ellis could have a heady discussion about LGLL and hematology in general. I wouldn't want to be the medical stenographer during that conversation.
UVa is in Charlottesville, VA, about 3 1/2 hours from Winston-Salem, not a huge distance to travel if I ever decide I want my large granular lymphocytes to visit the guru. I'm sure he's got lots of people knocking on his door and awaiting entry into the clinical trials that he administers; probably from all over the country if not the world.
The UVa Cancer Center also has a LGLL registry for anyone who has been diagnosed with LGLL and simply wants to contribute to the body of knowledge about this disease. I sent an email inquiry to the registry administrator asking if my specimens and reports were worthy of the guru's attention. I got a nice email back from Holly Davis saying that they would absolutely welcome my participation in the study. Included in the email from Holly were several forms that I and my local doc would need to complete to officially register with the program. I responded to Holly telling her that I would look over the forms and get back with her.
After reviewing the LGLL Registry consent and medical history forms I emailed Holly back and asked her to call me so I could ask some questions. She promptly returned my call that same afternoon. I'm really disappointed that there's not a picture of Holly on the UVa website so that I can post it here too. That's an oversight that sorely needs attention. If I ever visit the LGLL guru in Charlottesville, I'll get my picture taken with her and post it.
Holly was a veritable fount of wisdom about the registry program. It seems that the worst that could happen is my DNA gets swiped by some dastardly third party who may then, in a 1 in a gazillion chance, link it to my name. Horrors!! Hell, I'd much rather deal with that unlikely event than all the banks sending me crap in the mail nearly every freakin' day! In fact, it might be refreshing to have some really weird mail come that was somehow traced back to the my DNA. It's a brave new world out there!
Getting back to my conversation with Holly, (Is she a doc? Should I be calling her Dr. Holly, or Doctor Davis? Another piece of information to get if I go up there.) she told me that I could be a part of the registry and could also become a patient of the LGLL guru himself if I chose. Now that sounds like a great third option! I mean, who wouldn't want to be under the care of the person who practically discovered and named the disease? There has to be huge bonus points for that but where does one redeem them?
"Excuse me St. Peter but I have 25 thousand un-redeemed LGLL points from the LGLL guru himself. Can I get an upgrade on my eternal accommodations? I'd like a flat on a street of gold overlooking the garden of Eden."
So now I have three options for the 'wait and see' phase of my LGLL odyssey which includes periodic blood draws followed by CBC tests and doctor visits.
1) Dr. Paschold at Novant
2) Dr. Ellis at Wake Forest Baptist Health
3) Dr. Loughran at UVa Medical Center
I feel like the wait and see period would be a waste of time for Dr. Loughran. He's got his nose to the grindstone and doesn't need to see my boring lymphocytes until I become symptomatic. Then, he's the big gun held in reserve loaded with clinical trials and all kinds of arcane, yet to be FDA-approved treatment options. If I can get my blood drawn at the local Lewisville Family Practice of WFBH but do my semi-annual or periodic visits with Dr. Ellis, that has some merit. Or, if I want to continue to enjoy great company under warm, inviting conditions with Novant's blood cancer emperor, I could stay on the schedule with Dr. Paschold for quarterly blood draws and semi-annual visits. Mari Jo is of the opinion that I should visit UVa to have an initial meeting with Dr. Loughran to establish a relationship with him and the program.
Each option has advantages and discussing them will provide great dinner conversation. Regardless of which option we choose I think joining the LGLL registry at UVa is a no-brainer. Why not help increase the body of knowledge about this disease? Even though the information may not help me, it may help some poor schmuck later on down the road. If it does, I'll take my accolades posthumously and with great humility as I chill with my dad, Ghandi, Jesus, Mohammed, Martin Luther King, Mother Theresa, Krishna, the Buddha and Linda Ronstadt while sipping on a top-shelf nectar of the gods.
UVa is in Charlottesville, VA, about 3 1/2 hours from Winston-Salem, not a huge distance to travel if I ever decide I want my large granular lymphocytes to visit the guru. I'm sure he's got lots of people knocking on his door and awaiting entry into the clinical trials that he administers; probably from all over the country if not the world.
The UVa Cancer Center also has a LGLL registry for anyone who has been diagnosed with LGLL and simply wants to contribute to the body of knowledge about this disease. I sent an email inquiry to the registry administrator asking if my specimens and reports were worthy of the guru's attention. I got a nice email back from Holly Davis saying that they would absolutely welcome my participation in the study. Included in the email from Holly were several forms that I and my local doc would need to complete to officially register with the program. I responded to Holly telling her that I would look over the forms and get back with her.
After reviewing the LGLL Registry consent and medical history forms I emailed Holly back and asked her to call me so I could ask some questions. She promptly returned my call that same afternoon. I'm really disappointed that there's not a picture of Holly on the UVa website so that I can post it here too. That's an oversight that sorely needs attention. If I ever visit the LGLL guru in Charlottesville, I'll get my picture taken with her and post it.
Holly was a veritable fount of wisdom about the registry program. It seems that the worst that could happen is my DNA gets swiped by some dastardly third party who may then, in a 1 in a gazillion chance, link it to my name. Horrors!! Hell, I'd much rather deal with that unlikely event than all the banks sending me crap in the mail nearly every freakin' day! In fact, it might be refreshing to have some really weird mail come that was somehow traced back to the my DNA. It's a brave new world out there!
Getting back to my conversation with Holly, (Is she a doc? Should I be calling her Dr. Holly, or Doctor Davis? Another piece of information to get if I go up there.) she told me that I could be a part of the registry and could also become a patient of the LGLL guru himself if I chose. Now that sounds like a great third option! I mean, who wouldn't want to be under the care of the person who practically discovered and named the disease? There has to be huge bonus points for that but where does one redeem them?
"Excuse me St. Peter but I have 25 thousand un-redeemed LGLL points from the LGLL guru himself. Can I get an upgrade on my eternal accommodations? I'd like a flat on a street of gold overlooking the garden of Eden."
So now I have three options for the 'wait and see' phase of my LGLL odyssey which includes periodic blood draws followed by CBC tests and doctor visits.
1) Dr. Paschold at Novant
2) Dr. Ellis at Wake Forest Baptist Health
3) Dr. Loughran at UVa Medical Center
I feel like the wait and see period would be a waste of time for Dr. Loughran. He's got his nose to the grindstone and doesn't need to see my boring lymphocytes until I become symptomatic. Then, he's the big gun held in reserve loaded with clinical trials and all kinds of arcane, yet to be FDA-approved treatment options. If I can get my blood drawn at the local Lewisville Family Practice of WFBH but do my semi-annual or periodic visits with Dr. Ellis, that has some merit. Or, if I want to continue to enjoy great company under warm, inviting conditions with Novant's blood cancer emperor, I could stay on the schedule with Dr. Paschold for quarterly blood draws and semi-annual visits. Mari Jo is of the opinion that I should visit UVa to have an initial meeting with Dr. Loughran to establish a relationship with him and the program.
Each option has advantages and discussing them will provide great dinner conversation. Regardless of which option we choose I think joining the LGLL registry at UVa is a no-brainer. Why not help increase the body of knowledge about this disease? Even though the information may not help me, it may help some poor schmuck later on down the road. If it does, I'll take my accolades posthumously and with great humility as I chill with my dad, Ghandi, Jesus, Mohammed, Martin Luther King, Mother Theresa, Krishna, the Buddha and Linda Ronstadt while sipping on a top-shelf nectar of the gods.
Saturday, July 25, 2015
Sometime during the morning mom decided she wanted to ride down to Teachey, the small, rural, Duplin County town where she and my dad grew up. Some family on her side still live in the area, not so many on my dad's side; they got the hell out of Dodge, or Rockfish in their case, the township in which they lived. There used to be a lot more of my mom's family living there but most have moved on - to a more sublime afterlife or away from the dusty dirt roads that once defined the town. To call Teachey a town is really a stretch, it's more like a crossroads with a railroad track through the middle of it. It's close to Wallace, NC if that helps. If you're having problems falling asleep, do a street level drive through Teachey using Google Maps. It's better than Ambien and a hell of a lot cheaper. To facilitate your slumber, here's a link to follow.
https://www.google.com/maps/@34.781245,-78.006902,3a,75y,247.49h,75t/data=!3m6!1e1!3m4!1sYSFeDR3wzTIoRFXUPc5wtQ!2e0!7i13312!8i6656!6m1!1e1?hl=en
https://www.google.com/maps/@34.781245,-78.006902,3a,75y,247.49h,75t/data=!3m6!1e1!3m4!1sYSFeDR3wzTIoRFXUPc5wtQ!2e0!7i13312!8i6656!6m1!1e1?hl=en
This is a good time to point out that Teachey is supposedly named for Edward Teach, aka Blackbeard, the famous pirate who presumably frequented the North Carolina coast. But what would Blackbeard be doing 45 miles inland? I'm not sure if the Northeast Cape Fear River was navigable in those days but it would have provided Blackbeard with a watery pathway to the area. Maybe he was burying some booty or looking for buried booty? (Double meaning warning for post-Boomers!) To date we haven't discovered any buried booty, of either type.
Mom, Mari Jo and I drove to Teachey using the 'back' roads, NC 111 and 11, through towns like Kenansville and Charity, the former a veritable bustling hub of commerce compared to Teachey. The back roads are far more scenic if you're into rural landscapes. The other route is faster but more scenically sterile, US 117 and I-40. As we approached the area where she grew up, my mom pointed out the house where her maternal grandmother, 'Big Mama' Rouse, lived back in the early 1900's. It's a smallish house with an inviting front porch and a large front yard neatly framed with a white picket fence near the road. (Photo credit: my lovely wife, Mari Jo.)
Once we arrived in Teachey, our first stop was the cemetery where my dad and many relatives on my mom's side of the family are buried. I'm not sure what prompted this side trip but it very well may have been the conversation about mortality the night before. The visit to the cemetery was emotionally uneventful but nevertheless poignant. It's been 5+ years since my dad passed and I still miss him like crazy at times. You're still my hero dad and I love you to the moon and back! You're the first person I want to see in the afterlife, if there is one.
Once we arrived in Teachey, our first stop was the cemetery where my dad and many relatives on my mom's side of the family are buried. I'm not sure what prompted this side trip but it very well may have been the conversation about mortality the night before. The visit to the cemetery was emotionally uneventful but nevertheless poignant. It's been 5+ years since my dad passed and I still miss him like crazy at times. You're still my hero dad and I love you to the moon and back! You're the first person I want to see in the afterlife, if there is one.
Just a quarter mile from the cemetery is the house where my grandmother and grandfather lived when I was a kid. We stopped in front of it to snap a photo. What memories I have of that house and the huge farm that surrounded it. I'll save that story for another post. (Photo credit: MJ)
While in the Teachey metropolitan area we decided to visit some of my relatives living in the suburbs. The traffic was a bitch! First visit was to see my aunt Mary Vann, my mom's sister-in-law who was married to mom's brother, Rufus Casper Jenkins. He was called R.C. most of his life, for obvious reasons. If I was given the choice of going by either Rufus or Casper, I think I would seek out some terminal illness in order to limit my suffering with such a moniker!
While in the Teachey metropolitan area we decided to visit some of my relatives living in the suburbs. The traffic was a bitch! First visit was to see my aunt Mary Vann, my mom's sister-in-law who was married to mom's brother, Rufus Casper Jenkins. He was called R.C. most of his life, for obvious reasons. If I was given the choice of going by either Rufus or Casper, I think I would seek out some terminal illness in order to limit my suffering with such a moniker!
Then we drove all the way across town through horrendous traffic yet again. This time we visited with my cousin Winifred, my mom's niece, who is the daughter of her other brother, Elmore Royal Jenkins, who went by the nickname of 'Buck', again for obvious reasons. My mom's father was Elmore so Buck was a junior.
At this point most readers are probably thinking what the hell is it with the names of my mom's siblings? Were the names chosen just to make them grow up tough, like a boy named Sue? My mom's name is Elsie Lorea, also not one of the most common names around. My grandfather and grandmother weren't on drugs when their children were born, of that I am absolutely sure. These have to be family names that they wanted to keep within the family for as long as possible. Unfortunately, for them, but fortunately for the grandchildren, that trend ended with my mom and her two brothers. My cousins' names are Bobby, Winifred, Danny and Donald. My brother's name is Joseph and none of those names are as catchy or macho-inducing as Elmore Royal and Rufus Casper. Alas, the family tradition may have come to an abrupt halt but the family lives on anyway. Isn't that more important?
We returned to Goldsboro using the more sterile route; I like mixing things up. After a rather late but delicious dinner of grilled T-bone steak, charred sweet potato slices and corn-on-the-cob, we followed this gastronomical tango with a slow-dance of hand-cranked, home-made peach ice-cream. (Was there a misuse of hyphens somewhere in that last sentence?) Exhausted by our afternoon adventures in the land of Blackbeard and sated by our evening meal, we languorously beckoned the night and embraced its sweet promise of dreamy repose in the house that I grew up in lo so many years ago.
At this point most readers are probably thinking what the hell is it with the names of my mom's siblings? Were the names chosen just to make them grow up tough, like a boy named Sue? My mom's name is Elsie Lorea, also not one of the most common names around. My grandfather and grandmother weren't on drugs when their children were born, of that I am absolutely sure. These have to be family names that they wanted to keep within the family for as long as possible. Unfortunately, for them, but fortunately for the grandchildren, that trend ended with my mom and her two brothers. My cousins' names are Bobby, Winifred, Danny and Donald. My brother's name is Joseph and none of those names are as catchy or macho-inducing as Elmore Royal and Rufus Casper. Alas, the family tradition may have come to an abrupt halt but the family lives on anyway. Isn't that more important?
We returned to Goldsboro using the more sterile route; I like mixing things up. After a rather late but delicious dinner of grilled T-bone steak, charred sweet potato slices and corn-on-the-cob, we followed this gastronomical tango with a slow-dance of hand-cranked, home-made peach ice-cream. (Was there a misuse of hyphens somewhere in that last sentence?) Exhausted by our afternoon adventures in the land of Blackbeard and sated by our evening meal, we languorously beckoned the night and embraced its sweet promise of dreamy repose in the house that I grew up in lo so many years ago.
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