Although I slept like a rock last night, I can feel the anxiety building some this morning. My first trip to a cancer doc. Yikes! Even considering some ugly possibilities, I’m still relatively calm because I feel certain that today’s doctor visit won’t provide me with any conclusions, probably only some blood drawn and testing. More needle sticks! "Happy, happy, joy, joy!"
Holy shit! Finding 1010 Bethesda Court (not Rd.) was a royal pain in the ass! I must have turned around at least 5 times looking for the Derrick Davis Cancer Center, which is where Dr. Paschold’s office is located. Bad omen! I finally had to call what I thought was Dr. Paschold’s office to ask for directions. It seems when you do an internet search for Dr. Paschold it shows you his Thomasville office phone number. So, when I called it they gave me the correct number in Winston-Salem. When I called the correct number, that’s when I learned the place was called the Derrick Davis Cancer Center. I wonder who the hell Derrick Davis is/was? Hopefully he was someone treated by Dr. Paschold who lived a very long and fruitful life but didn't publish a fancy blog about it.
Gene Paschold is a hoot! He’s funny, informative and always attempting to put you at ease. In fact, at times, the other cancer center staff seems to go over the top in trying to accommodate and make you feel anxiety-free, which is understandable in a place like that. I tried to rise to the occasion and be just as humorous.
As it turns out, Gene goes to RIH too! That was a very refreshing and cool revelation. He spoke highly of the practice and the practice's practices, meaning that they don’t prescribe Rx meds unless necessary and give natural supplements if they will do the trick. Apparently this guy (Gene) is a top notch cancer doc and it’s very reassuring that he goes to RIH and that RIH referred me to him.
His first comment to me was that I shouldn’t be too concerned about the high lymphocyte count. Even so, they drew blood and immediately analyzed it – CBC and he checked it out under the microscope. Pretty slick I thought since now almost all lab work is farmed out and takes days to get the results back. Apparently the DD Cancer Center is a one-stop shopping place because they also have a pharmacy in the building.
Gene himself came to the waiting room to greet me and take me to the examining room after my blood was drawn. That was also impressive. That’s a great attitude and bedside manner when you’re possibly dealing with a life-threatening disease like cancer. Brownie points for the nice facility, affable staff and fantastic doc.
When Mari Jo told Gene that she was previously a Winkle, he immediately remembered her and they had a warm embrace. See, I can never go any fucking place without my wife knowing someone. Should I be comforted or concerned about that? Regardless, that’s how it is.
When my blood work came back Gene went over it with me and again reassured me that there was nothing too concerning in the results. However, my lymphocyte count had blossomed to 6000, up 1100 since my blood test 3 weeks earlier at RIH. WTF is going on in my bone marrow and thymus, a lymphocyte orgy? (I later learned that lymphocytes maintain their numbers through normal, or in my case, abnormal, cell division. The ol’ thymus doesn’t produce lymphocytes in adults, it’s just a place they go to hang out for a bit.) Obviously my bone marrow is extremely fertile and studly. So, if lymphocytes are part of the immune system why isn’t more better? Apparently a given unit of blood can only hold so many of all the different kinds of cells that make up the blood and when one kind of cell starts crowding out others it’s a problem. Gene explained that all of my other blood stuff looked fine except that a couple were inverted 60/40 to 40/60. He suggested that what I might have is chronic lymphocytic leukemia but that a further analysis to ‘label’ the lymphocytes would reveal more. He said my lymphocytes look benign (whew!) under the scope but he was sending the blood sample to a pathology lab for flow cytometry and polymerase chain reaction assay to determine more.
Overall, it was a good visit and somewhat reassuring. On to the next chapter when the more complete analysis comes back. I made a follow-up visit for July 15.
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.
Friday, June 26, 2015
When I got home today Mari Jo told me that Dr. Paschold’s office called her number to confirm my appointment. WTF!? Why are they calling her to confirm an appointment for me? It’s almost as if they insist that she know about this appointment. She said that when they called they asked for me. Where did they get her number from?
Thursday, June 25, 2015
I got a call today from Dr. Paschold’s office. The lady, whose name I cannot remember except as ‘Fred’, was affable and wanted to know all my medications and supplements I was currently taking. She started reading from some list that was outdated. I should have asked her where she got that list from but instead just went down my own accurate list with her. It makes me wonder if that outdated list came from Robin Hood Integrated Health and if so, I’m rather irritated that my own primary doctor isn’t current on what I am taking. I am more than a little irritated that my lymphocyte counts have been going up as long as they have without some red flag being raised earlier.
At any rate, I went over my entire list of supplements and meds with her and as I did, realized that I’m not real clear on what some of them are for. That’s gonna change, immediately. I’m going to update my little supplement and med spreadsheet by including a column for the purpose of each. The other thing I’m going to do is ask Dr. Wiggy if the supplement’s efficacy can be judged by quantitative lab results or anecdotal ‘how do you feel’ evidence. I don’t mind chasing normal range numbers for blood chemistry if they are clearly supportive of good health. Likewise, I’ll be happy to check in with my feelings to see if some of those that can’t be analyzed with lab results are actually having an effect on my body or attitude.
The woman who called was quite humorous. We had a few laughs about the spelling of some of the supplements, especially methylcobalamin. Near the end of the conversation when she volunteered that Target was my preferred pharmacy, another piece of outdated information. (I’m going to ask them about where they got that info from.) I told her that now I use Costco. She immediately told me a good friend of hers works there who calls her Fred. Shit, I can’t remember the name of the pharmacy tech now and I’m supposed to tell her that Fred said hello, which should result in a laugh and certain knowledge of who this person at Dr. Paschold’s office is.
At any rate, I went over my entire list of supplements and meds with her and as I did, realized that I’m not real clear on what some of them are for. That’s gonna change, immediately. I’m going to update my little supplement and med spreadsheet by including a column for the purpose of each. The other thing I’m going to do is ask Dr. Wiggy if the supplement’s efficacy can be judged by quantitative lab results or anecdotal ‘how do you feel’ evidence. I don’t mind chasing normal range numbers for blood chemistry if they are clearly supportive of good health. Likewise, I’ll be happy to check in with my feelings to see if some of those that can’t be analyzed with lab results are actually having an effect on my body or attitude.
The woman who called was quite humorous. We had a few laughs about the spelling of some of the supplements, especially methylcobalamin. Near the end of the conversation when she volunteered that Target was my preferred pharmacy, another piece of outdated information. (I’m going to ask them about where they got that info from.) I told her that now I use Costco. She immediately told me a good friend of hers works there who calls her Fred. Shit, I can’t remember the name of the pharmacy tech now and I’m supposed to tell her that Fred said hello, which should result in a laugh and certain knowledge of who this person at Dr. Paschold’s office is.
Wednesday, June 24, 2015
To arrive at a conclusion based on a little knowledge is dangerous and can be a cause of great anxiety. This morning I told Mari Jo that itching was one of the symptoms of some of the blood disorders. What’s the connection there, I thought? I have noticed that I have been itching a lot lately, all over my body but mostly my neck and arms. Weird, unexplainable and sudden itches.
Around 10:30 this morning I did a quick internet search for why blood disorders would cause you to itch. Based on my very brief reading, it’s because the blood cancer has spread (metastasized, a much better word) to the skin. I immediately closed my browser window and thought, “Well I guess I’m totally fucked.”
The anxiety has set in and if I have a brain in my head I will a) stop playing doctor by doing limited internet searches and drawing conclusions, or b) do more extensive research so that my anxiety can be fully justified or debunked.
I promise to do some more in-depth research but right now, it’s time to devour my Subway turkey and ham sandwich, on toasted whole wheat with pepper-jack cheese, lettuce, tomato, onions, banana peppers, salt, pepper, oregano, oil and vinegar. Jeez, I’m such a creature of habit.
Around 10:30 this morning I did a quick internet search for why blood disorders would cause you to itch. Based on my very brief reading, it’s because the blood cancer has spread (metastasized, a much better word) to the skin. I immediately closed my browser window and thought, “Well I guess I’m totally fucked.”
The anxiety has set in and if I have a brain in my head I will a) stop playing doctor by doing limited internet searches and drawing conclusions, or b) do more extensive research so that my anxiety can be fully justified or debunked.
I promise to do some more in-depth research but right now, it’s time to devour my Subway turkey and ham sandwich, on toasted whole wheat with pepper-jack cheese, lettuce, tomato, onions, banana peppers, salt, pepper, oregano, oil and vinegar. Jeez, I’m such a creature of habit.
This afternoon I’m calmer, after doing some additional reading of the symptoms, causes and treatments of high lymphocyte counts. I’m still not very clear on what may be the underlying cause but the treatments vary from the sublime ‘watchful waiting’ to the ridiculous radiation/chemo treatments. I don’t have many risk factors other than being an older white male. Those risk factors apply to chronic lymphocytic leukemia (CLL), a condition that afflicts almost 15,000 new patients each year.
Monday, June 22, 2015
I guess she was meant to know. Of all days for my wife to get the mail, it had to be today. That’s the day when a letter from Novant Health Oncology Specialists arrived, addressed to me.
To explain, my wife has a history of generally ignoring the mail and to some extent I don’t blame her, especially now – bad news comes in the mail. It goes deeper than that but I won’t belabor the point; she got the letter with the Novant return address emblazoned on the top left of the envelope. I’m sure the word oncology appeared as if it was in 10 foot high letters to her.
Normally, we would have a mail box full of junk mail – circulars, credit card solicitations, coupons, you name it – but today, only one fucking piece of mail…from the cancer people. On those other days, that letter may have gone unnoticed by Mari Jo, but not today; one lonely piece of mail sitting on the floor of our mailbox. She was meant to know. So why didn’t I tell her? OK, time for some background.
Over the last few visits to my doctor’s office, he noticed that my lymphocyte count was higher than the normal range. On my visit three months ago, he expressed mild concern and said we will recheck it in three months to see if it is still high. At my most recent visit when the new labs came back my lymphocyte counts were higher than they have ever been, 4900. But, my doc didn’t seem to recall that previous conversation about rechecking them until I pulled out a list of counts from 3 years back. My lymph counts have been steadily increasing over that period of time. When I showed him that, he got more concerned, used the lymphoma word and decided to refer me to a hematologist – a blood disorder doc. No one ever told me that blood disorders and cancer go hand in hand.
So, three days after my last doctor’s visit his office called to tell me they were setting up an appointment for me with Dr. Gene Paschold and that I would receive a mailed confirmation from them soon. That’s where I should have intervened and said, “Well, you just gave me the information I need so please don’t waste paper and a perfectly good postage stamp by sending me in writing what I already know.” Brain fart! It never occurred to me that I wouldn’t get the mail from the mailbox, that a series of quasi-unlikely events would unfold that would have my wife waiting for me at home with this concerned look on her face while sipping a tonic water. When I got home today I knew immediately something was amiss but didn’t know what. You know, that coolness in the tone and eye contact avoidance thing, that’s what I was getting. Almost like an initial emotional detachment because of a future but inescapable doom.
I wasn’t going to tell her about the appointment because I didn’t want her to worry unless there was something to worry about. God, now that I put that in writing it seems so cliché. But, isn’t that a valid reason to withhold information or is that just ‘guy-think’? My dad kept an atrial fibrillation secret from my mom for over 30 years for that very reason! I really saw no need for two people to worry when I was quite capable of worrying enough for the both of us. Seriously, she was supposed to know and no matter what I would have done, the cosmos intervened and thrust the news upon us both. Two people worrying is an exponential rise in worry, right? Like, worry-squared.
If you look up hematology on the internet, you get pretty straightforward meanings: the study and treatment of diseases of the blood. Things like hemophilia, anemia, leukemia, lymphoma and myeloma, a veritable death-wish list for those wanting to take the natural, slow route to demise. Enough of this morbid talk. Let’s think happy thoughts because Never-Land may be closer than we think and I can’t wait to see Tinkerbell in that cute little green outfit. She’s so smokin’ hot and can sprinkle her fairy dust on me any day!
I’m doing my best to resist a total internet search of everything that could cause a slow but steady rise in lymphocytes. Why bother? Will that change the outcome? Not one whit, but I’m naturally curious, even if they may be out to kill me. Oops, there I go again slipping into morbidity.
What I really want to do is stay focused on doing things, to keep my mind occupied. Even this blog is doing that, in a way.
To explain, my wife has a history of generally ignoring the mail and to some extent I don’t blame her, especially now – bad news comes in the mail. It goes deeper than that but I won’t belabor the point; she got the letter with the Novant return address emblazoned on the top left of the envelope. I’m sure the word oncology appeared as if it was in 10 foot high letters to her.
Normally, we would have a mail box full of junk mail – circulars, credit card solicitations, coupons, you name it – but today, only one fucking piece of mail…from the cancer people. On those other days, that letter may have gone unnoticed by Mari Jo, but not today; one lonely piece of mail sitting on the floor of our mailbox. She was meant to know. So why didn’t I tell her? OK, time for some background.
Over the last few visits to my doctor’s office, he noticed that my lymphocyte count was higher than the normal range. On my visit three months ago, he expressed mild concern and said we will recheck it in three months to see if it is still high. At my most recent visit when the new labs came back my lymphocyte counts were higher than they have ever been, 4900. But, my doc didn’t seem to recall that previous conversation about rechecking them until I pulled out a list of counts from 3 years back. My lymph counts have been steadily increasing over that period of time. When I showed him that, he got more concerned, used the lymphoma word and decided to refer me to a hematologist – a blood disorder doc. No one ever told me that blood disorders and cancer go hand in hand.
So, three days after my last doctor’s visit his office called to tell me they were setting up an appointment for me with Dr. Gene Paschold and that I would receive a mailed confirmation from them soon. That’s where I should have intervened and said, “Well, you just gave me the information I need so please don’t waste paper and a perfectly good postage stamp by sending me in writing what I already know.” Brain fart! It never occurred to me that I wouldn’t get the mail from the mailbox, that a series of quasi-unlikely events would unfold that would have my wife waiting for me at home with this concerned look on her face while sipping a tonic water. When I got home today I knew immediately something was amiss but didn’t know what. You know, that coolness in the tone and eye contact avoidance thing, that’s what I was getting. Almost like an initial emotional detachment because of a future but inescapable doom.
I wasn’t going to tell her about the appointment because I didn’t want her to worry unless there was something to worry about. God, now that I put that in writing it seems so cliché. But, isn’t that a valid reason to withhold information or is that just ‘guy-think’? My dad kept an atrial fibrillation secret from my mom for over 30 years for that very reason! I really saw no need for two people to worry when I was quite capable of worrying enough for the both of us. Seriously, she was supposed to know and no matter what I would have done, the cosmos intervened and thrust the news upon us both. Two people worrying is an exponential rise in worry, right? Like, worry-squared.
If you look up hematology on the internet, you get pretty straightforward meanings: the study and treatment of diseases of the blood. Things like hemophilia, anemia, leukemia, lymphoma and myeloma, a veritable death-wish list for those wanting to take the natural, slow route to demise. Enough of this morbid talk. Let’s think happy thoughts because Never-Land may be closer than we think and I can’t wait to see Tinkerbell in that cute little green outfit. She’s so smokin’ hot and can sprinkle her fairy dust on me any day!
I’m doing my best to resist a total internet search of everything that could cause a slow but steady rise in lymphocytes. Why bother? Will that change the outcome? Not one whit, but I’m naturally curious, even if they may be out to kill me. Oops, there I go again slipping into morbidity.
What I really want to do is stay focused on doing things, to keep my mind occupied. Even this blog is doing that, in a way.
In the beginning...
On Wednesday, July 15, 2015 I was diagnosed with chronic large T-cell lymphocyte leukemia (LGLL), a very rare blood-borne form of cancer. This form of leukemia screws with your body's defense mechanism by making your white blood cells less effective in battling infections. This blog about my journey with it is going to be stream-of-consciousness, irreverent, stupid, morbid, informative, profane, profound and mostly, I hope, humorous for anyone who cares to read. It might even be entertaining, but don’t get your hopes up. At the time of diagnosis I’m a 63 year old white male and 66.66% of those attributes will not change over the course of the rest of my life. Although this blog is heavily defined by my disease I intend to resist the urge to define the rest of my life by it, however long that may be. So fuck off cancer and let me get on with it; I hear the siren call of Scylla and Charibdis!
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