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.

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.

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.

"We must be back in Kansas, Toto!"

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.

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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


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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.

"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.

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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

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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