New Labs

Another visit to the gleaming, curvaceous Comprehensive Cancer Center at WFBH yields new lab results. Sounds like a tabloid headline doesn't it? Let's not get too dramatic, yet.

The results are actually quite undramatic. To wit: see the updated table to the right. My lunatic lymphocytes are holding their own since my last visit and even down slightly. I suppose we can conclude that my immune response to the multiple yellow jacket stings did not contribute to the increase three months ago. Readers may also be glad to know that I remembered to wear jeans every time I mowed the lawn since then in an attempt to prevent a recurrence of that insect encounter.

Interestingly, my lymphocytes are down by 200 this time. Also notable is that my neutrophils are hanging in there as are my red blood cells and hemoglobin. All in all, undramatic and encouraging that my blood isn't going south on me. Another lab and office visit is scheduled for January. Can't wait to see Dr. Ellis again.

BCBSNC Bright Spot

Unrelated to my LGLL, I called BCBSNC the other day to discuss an adjusted EOB that I received. It appeared to show that I was due a refund of a payment I had previously made to WFBH for services at the urology clinic. (I won't bore you with the gory details!) Being skeptical of ever getting money back from the health care industry I called BCBSNC Customer Service to ask about it. To my most pleasant surprise I got connected with an amazing young lady who was so over-the-top in her handling of the questions and subsequent discussion with my health care provider, I had to write a blog post about it. I've inserted below the letter I wrote to the BCBSNC CEO about her.

Despite my periodic bouts of cynicism about the health care industry, there are bright spots within that may yet convince me of its ultimate goodness. All my calls from now on will be to the Fayetteville, NC Call Center in hopes that I can speak with Brea again.

August 4, 2016

Mr. Gerald Petkau

Executive Vice President and Chief Operating Officer

Blue Cross Blue Shield of North Carolina

4615 University Drive

Durham, NC 27707

Dear Mr. Petkau,

I am a firm believer in giving credit where it is due and commending people who perform their jobs at a superior level. You have such a person in your Fayetteville Call Center by the name of Brea. I’m guessing that she is the only Brea on your staff there so her full identity can easily be ascertained.

I had the pleasure of speaking with Brea on Wednesday, August 3 to discuss an adjusted EOB that I received from BCBSNC. Brea was knowledgeable, friendly, courteous and above all a strong advocate for me in helping to resolve a billing issue with my health care provider, which ultimately resulted in a refund.

Brea initiated a three-way conference call with my health care provider so that we could all discuss the adjustment together. When I became annoyed with my health care provider’s explanation for why the refund was being withheld, Brea was able to calmly and diplomatically redirect the conversation by asking for alternative solutions. After that, I simply kept quiet and let this amazing young lady ply her trade and get to a solution that satisfied everyone. After the conversation ended, I effusively thanked Brea for her handling of the discussion with a billing clerk who was surly and becoming defensive. She has a future in the diplomatic corps!

Please pass along to Brea and her supervisor my sincere gratitude for her over-the-top assistance.

Best regards,

Wayne Turner

Dr. Ellis Visit # 3 and new labs

My third appointment with Dr. Ellis was on Wednesday, July 20, 2016. Once again I got to experience the gleaming, provocatively curvaceous, metal and glass building at Wake Forest Baptist Hospital known as the Comprehensive Cancer Center. Despite the foreboding name, It doesn't hold the same trepidation for me as I'm sure it does for others. If fact, it may never if my prognosis remains the same. I can't begin to imagine what demons some cancer patients bring into this building dedicated to the demise of the disease but I'm glad it is here.

My lab appointment was for 9:00 a.m. and my doc appointment for 9:30 a.m. At 10:00 a.m., after an obligatory delay, as imposed by the take-a-number and wait-to-be-called registration system, I gave up 10 vials of blood, three of which were for WFBH and seven for the LGLL Registry. I expect to receive a complimentary membership in the Transylvania Planned Giving Program soon. The nurse who did the blood draw wasn't overly friendly but that regressive personality trait was easily compensated for by her gentle touch with the needle. I'll take a sour disposition and gentle needle stick any day over someone who is ebullient but clumsy. The efficiency with which this place works was confirmed when the nurse called me back to the examining room while I was still getting my blood drawn. Upon my return to the lab waiting area I was immediately whisked off to the examination area.

I was first attended by Lauren Imboden, an affable and pleasant young physician's assistant who poked and prodded me to insure I didn't have any swollen lymph nodes or spleen. As it turns out I did not - good news! She asked general questions about how I was feeling to which I gave positive answers but stated that I have been enjoying naps more lately. After a brief discussion about my marginally low red blood cell count, we agreed that my slight lethargy may be because of my under-active thyroid which my primary doc is working to remedy.

Dr, Ellis was in good spirits this morning. She was downright relaxed, cheerful and, in a manner of speaking, charming. Since I was sitting in one of the side chairs and Mari Jo in the other, she hopped up on the examination table with legs dangling and started the discussion. The entire time Dr. Ellis was speaking with me she was moving both her lower legs back and forth in an opposing manner, almost like trying to click her heels together. Maybe we've just gotten our chemistry down by now or maybe she simply enjoys seeing someone who is still healthy and not going through treatment. Maybe I'm the highlight of her day in some odd way because she knows I'm not going to die on her watch. If the dark side of her occupation is morbidity the light side is vitality and I can provide her with that in spades. We had some of the same conversation I previously had with the PA and told her about seeing a new primary care physician, Neil Sparks, recently. (Stay tuned on that front. Since I've only been to see him once I'm not going to jump to any conclusions about how that relationship will turn out.) Since I was called back to the examination room so soon after my blood was drawn, the complete blood-work wasn't completed during my visit with Dr. Ellis.

My complete blood analysis came back the following day. My lymphocyte count increased to 7200, up from 5200 back in January. Through an email exchange, Dr. Ellis and I agreed that this was possibly the result of an immune response to 10 yellow jacket stings the week before. (I moved over a nest of those buggers and they chose to attack my lower extremities en-masse. I couldn't run fast enough or brush them off my feet and legs quickly enough.) The relative percentage of lymphocytes increased to 62%, both the highest numbers I've ever posted and far outside of any acceptable range I've ever found. Despite that, my neutrophil count remains within the healthy range at 3500 and 30%. RBC is still marginally low, right at the threshold of anemia.

I'm scheduled for another CBC in October and CBC with visit in January.

An Unexpected Confirmation

What does your butt and blood have in common? Mostly cells but one can confirm something about the other I learned.

I recently had an MRI done of my pelvis and butt to determine what is causing pain when I walk/run. Although the pain has subsided greatly after some near lethal doses of Ibuprofen, my ortho doc, Chris Miles, wanted to move ahead with an MRI to confirm his suspicions. Since I'd already met my deductible for the year, thanks to unsuccessful attempts to fix the pain/problem with physical therapy and a visit to the WFBH Men's Health Center, I thought, what the heck's another $150 for an MRI if it can provide a more definitive diagnosis. Posthaste, I was scheduled to visit the WFBH Imaging Center.

The magnetic resonance imaging (MRI) machine is an extremely noisy doughnut-shaped tunnel into which the patient is inserted and bombarded by electromagnetic energy in in order to map the innards. Let me clarify what I mean by noisy. Imagine yourself at an AC/DC concert (no pun intended) without earplugs and standing right next to the amp for Angus' guitar while he plays Thunderstruck. The MRI machine has no musical benefit though, only the end result is the same - damaged hearing and tinnitus. I've had tinnitus for over 30 years but now it has redoubled its effort to drive me bat-shit crazy thanks to the techs at WFBH Imaging Center who didn't insert my ear plugs correctly.

So what the hell does all that have to do with my LGLL? When reading the radiologist's report from my MRI I noticed a statement that seemingly had nothing to do with the pain from walking or running. Under the conclusions section of the report the last bullet read: "Diffuse heterogeneous bone marrow signal can be due to to bone marrow reconversion or myeloproliferative disorder." With my Sherlock Holmes-like powers of deductive reasoning and my above average grasp of medical vocabulary, I immediately thought this may be something my hemo/onco doc, Leslie Ellis, needs to see. I sent her an email about the conclusion and she responded that this was common in patients with blood borne cancers. I am so glad Dr. Miles was spared having to deliver that piece of shitty news.

"Ummm, Mr. Turner, I have some bad news and some really bad news."

At my upcoming July 20 appointment with Dr. Ellis I will get the full story about the bone marrow issue. In the meantime, I sent the report to the LGLL Guru, Dr. Loughren, at UVa. I also told them of my upcoming visit with Dr. Ellis so they are going to send me a blood sample kit. Another 10 vial blood deficit is in my near future for the LGLL Registry.

Convergence of the Twain

Here's another gem by Thomas Hardy that has many literary real-life applications other than the one for which it was originally written. The raw, powerful beauty of his words and the brooding tone pull you into every stanza even though you know the foregone conclusion.

The Convergence of the Twain

BY THOMAS HARDY

(Lines on the loss of the "Titanic")

I

In a solitude of the sea

Deep from human vanity,

And the Pride of Life that planned her, stilly couches she.

II

Steel chambers, late the pyres

Of her salamandrine fires,

Cold currents thrid, and turn to rhythmic tidal lyres.

III

Over the mirrors meant

To glass the opulent

The sea-worm crawls — grotesque, slimed, dumb, indifferent.

IV

Jewels in joy designed

To ravish the sensuous mind

Lie lightless, all their sparkles bleared and black and blind.

V

Dim moon-eyed fishes near

Gaze at the gilded gear

And query: "What does this vaingloriousness down here?" ...

VI

Well: while was fashioning

This creature of cleaving wing,

The Immanent Will that stirs and urges everything

VII

Prepared a sinister mate

For her — so gaily great —

A Shape of Ice, for the time far and dissociate.

VIII

And as the smart ship grew

In stature, grace, and hue,

In shadowy silent distance grew the Iceberg too.

IX

Alien they seemed to be;

No mortal eye could see

The intimate welding of their later history,

X

Or sign that they were bent

By paths coincident

On being anon twin halves of one august event,

XI

Till the Spinner of the Years

Said "Now!" And each one hears,

And consummation comes, and jars two hemispheres.

Cool Cancer Research Article

During the week of April 4 through 10, I went to San Diego to visit my son Blake, who just returned from deployment in the Persian Gulf. Really, in the gulf because he was on a ship. No landlubber is Blake who got his sea legs for real over the last six months. It was a great welcome home party made even better when my younger son, Logan, who is currently stationed in Germany, also came stateside to see Blake. What a great homecoming and reunion it was! Alas, all good things come to an end. We all returned to our respective homes and work. "WORK!", in my best Maynard G. Krebs voice. (Maynard was the affable but labor-phobic beatnik from the Dobie Gillis show.)

During my flights to and from San Diego I (twice) read an article in Scientific American about advances in immunotherapy treatments against blood-borne cancers. And thanks to the OpenStax Biology text that I've been reading, most of it made sense to me! Yes, my nerdiness is paying off in a strange, perverted way. Who but a nerd, and, of course, a college student, would download a 1,500 page biology text and read it? I love to learn!

Immunotherapy uses the body's own immune system to help identify and destroy malignant cells. Many malignant cells don't look 'foreign' to our immune system so don't trigger an immune response. This cellular trickery is common to most cancers and, in my case, allows those bad actors to continue to grow and crowd out other good stuff in my blood, like red blood cells, and neutrophils, which carry oxygen all over my body and fight off infections, respectively.

The most intriguing treatment approach described was the one where three types of cells were extracted from your body: healthy white blood cells, malignant white blood cells and healthy dendritic cells. Then the molecular structure of receptors on the healthy and malignant blood cells is compared to see how they differ. Malignant cells usually express at least one incorrect receptor protein on the cell surface which is what causes problems in the first place. (Remember my earlier post about apoptosis, natural cell death?) Once these differences are identified, the healthy dendritic cells can be 'programmed' to seek out the malignant cells that express the incorrect receptor, identify them to the immune system and thereby cause the immune system to attack those malignant cells. I'm glad medical researchers have some tricks of their own.

Unfortunately, without a subscription to Scientific American, we are unable to see this article online. Bummer! Otherwise, I would post a link to it under my Lymph Links section. The article is in Scientific American, Volume 314, Issue 4. I'm very pleased to see these kinds of advances in cancer treatments, especially since the side effects of them are usually far less consequential than chemotherapy or radiation.

Dr. Ellis visit # 2

On Wednesday, January 20 I had my second appointment with Dr. Ellis at Wake Forest Baptist Health Hematology and Oncology. I knew the drill there and experienced no surprises other than the amount of time it took. I arrived at 8:30 a.m. and didn't leave until 11:30 a.m. Dr. Ellis was running behind in her clinic visits.

Lab work done - only two vials of blood drawn this time! Labs included complete blood count and complete metabolic panel. I've updated my lymph absolute counts and percentages on the side bar to the right. It seems my lymphs have actually decreased since the last time; I suppose that's good news but was told that they can vary with this malady. Interestingly, the percentage has actually decreased too. I am clinically anemic at 13.9 grams of hemoglobin per deciliter of blood although this is up slightly from the previous result. Standard range for hemoglobin is 14 - 18 grams/deciliter of blood. My neutrophils are hanging in there too which helps to prevent infection. Overall, my numbers were slightly improved over last time. Hooray!!

The PA and Dr. Ellis examined me to make sure I had no enlarged lymph nodes or spleen. Negative on both of those. She was much more casual today and didn't even have her doc smock on. She was very affable and actually sat down and spent some time talking about things in general, including my struggle to find a WFBH primary care provider. She couldn't pull any strings to get me in to see her own personal physician. That search continues.

All in all, it was a good and uneventful visit. She has put me on a semi-annual blood test and office visit schedule, which is less frequent than the original quarterly blood test and semi-annual office visit schedule. That's very positive and was not unexpected since Dr. Loughran and Dr. Ellis had a discussion about my diagnosis and prognosis.

My next appointment is July 20 with Dr. Ellis. These blog posts may become less frequent but please resist temptations to compare me to George R. R. Martin!

Being Mortal

It's easy to be defiant and even cavalier in the face of a life-threatening disease when you're not experiencing any nasty symptoms and the event horizon is years or decades in the future. Moreover, there is something strangely comforting in knowing how you will die. Think about it. Notwithstanding doing something utterly stupid to hasten that life-extinguishing event, how would such knowledge change the way you live? I call it the Merlin Effect, after the wizard-like character in King Arthur legends.

Merlin, or Taliesin as he was sometimes called, was King Arthur's closest and most trusted adviser, not unlike Jafar in Disney's Aladdin, but with a far more constructive and lovable personae. One of the most remarkable characteristics Merlin possessed was a vision of his own death; Merlin knew in advance how he was going to die, but not when. It's easy to understand how such knowledge can be frightening but can you also grasp how it may be quite liberating? Short of self-annihilation for the express purpose of thwarting such mortal foreknowledge, one could live a life of near impunity. The Merlin Effect may bring a certain clarity of thought for some while in others it may bring paranoia, desperation, depression and a dearth of other dreary demeanors. For me it was the former, ergo this blog. Alas, it seems that the Merlin effect may not apply to me after all since learning that my own mortality may not be a result of LGLL. Regardless, it provides me with a perfect segue into the subject of human mortality along with its purpose and effects on our vitality, especially during our last days.

Being Mortal is a #1 national best-selling book by Atul Gawande, a practicing surgeon and author of several books. I heard a review of Being Mortal on an NPR program this past fall and, upon request, Mari Jo gave it to me for Christmas. Once I began, I read it in three consecutive days. In general, the book is about choices and how to maintain your ability to choose while struggling with your imminent mortality. It is not a self-help book or instruction manual on how to manage end-of-life decisions but a poignant treatise, punctuated by real end-of-life situations personally experienced by the author. Gawande delivers salient points about how the medical profession unintentionally is attempting to disenfranchise us from our mortality, that God-given gift, the great equalizer. He admits to and cites examples of his own awkwardness at managing end-of-life situations, with his patients as well as his own father. Most importantly he describes alternative ways some physicians interact with dying patients to understand better what they want from their last days as opposed to simply giving them treatment options. One memorable example is of a man who said he wanted to be able to watch football games on TV and eat ice cream during his last days. Consequently, instead of suggesting a treatment regimen of chemo-therapy that would have made him unable to enjoy food of any kind, he was referred to Hospice by his physician so that he could be at home with his family and indulge himself in all 31 flavors of Baskin Robbins ice cream if he so chose.

My first and only experience with Hospice was with Mari Jo's dad, Aaron Defferding who died on September 17, 2008. Although his time there was short, the human kindness, dignity and grace shown by all who attended him made a Hospice disciple out of me. Mari Jo and I visit the Kate B. Reynolds Hospice and Palliative Care Center in Winston-Salem at least once each year to remember Aaron's time there and to touch the plaque we had placed on the wall in honor of him and Mari Jo's mom, Harriet, also a Hospice patient several years earlier. Sometimes we take meals for patient's families and staff and sometimes we make monetary donations. Hospice is our choice for end-of-life so children take note.

Being Mortal can be a hard book to read, especially if you have ever directly witnessed the death of someone close to you. The book's conclusion instantly transported me back to the hospital room where Joe and I awaited the death of our dad on January 2, 2010. A heart-rending grief washed over me like a tsunami and tumbled me to the abyss of despair as I burst into tears at the description of the passing of Gawande's father. Once consoled by Mari Jo, I told her of its affect on me and how I regretted that my dad had not been able to receive Hospice care instead of dying in a hospital room, a cold, clinical, inhospitable cubicle designed for and attended by people who are trained only to do no harm. I personally think my dad's quality of life would have been much better during those last days had he been in Hospice.

After reading the sobering end-of-life accounts in Being Mortal, and despite my defiance and cavalier attitude now, I must conclude that my fragile, stoic facade will likely crumble as I begin to experience the intense physical and emotional pain that Gawande's patients did and, as a result, I will beg for God's mercy, pain relieving, stupor-inducing drugs, and that final sleep from which we never awaken. In the meantime, I will dust off my advanced health care directive and make sure it clearly articulates my end-of-life choices and attempts to minimize any potentially regrettable decisions my family could be faced with when that time comes.

UVA bills are in

It appears that my total out-of-pocket costs for my trip to see the Wizard of Oz are coming in very close to what I estimated. That's neither good nor bad because of the magnitude but it is good that I wasn't surprised. As I said in an earlier post lamenting the difficulty of getting pre-visit financial information, I don't keep an extra $600 laying around for the express purpose of enriching the medical industry.

Lamentations aside, here's a breakdown of costs for the UVA Medical Center trip back in November.

Professional services by Dr. Loughran
Amount billed..............................$470
My share.......................................$ 40

Professional services by Dr. Goldfarb (pathologist)
Amount billed..............................$279
My share.......................................$   0

Professional services by Dr. Mahadevan (pathologist)
Amount billed..............................$100
My share.......................................$   0

Facility services by UVA Medical Center (laboratory)
Amount billed...........................$4,144
My share....................................$  653

So, after all is said and done, and I've gotten my most recent diagnosis that this shit isn't going to kill me, that's the best $693 ever spent! For fellow LGLL readers who may be interested in the finer details of the lab work, see below. These details come directly from my BCBS EOB statement for the services shown. It is a detailed breakdown of the $4,144 amount above..

Laboratory services
Flow cytometry test................$3,006
TCR/PCR test.........................$   746
CBC........................................$   242
Other blood work....................$  120

The take-away from all of this is to bug the hell out of your insurance company and care providers to provide you with the information directly related to your visit, including physician services and facility services. Don't let the bastards get you down! Perservere!!