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!!