So much to share: All of it good.

Fall colors in Columbus, Ohio

Let me explain some of the reasons there are long gaps in my writing.

I am off to Detroit on my own tomorrow to lecture on myelodysplastic syndrome. It will be the 8th different city I have visited in 6 weeks, not including stops at airports and a second trip to Columbus. My agenda still has trips to Columbus x 2, Oakland, Sunnyvale, Chicago, and Atlanta.  Most will be taken as a lone road warrior, all before the end of the year. There is even a small chance of another trip for CME, maybe to NYC in December. Thank goodness that the last lecture on CLL to primary care that I am giving this year is in Anaheim, just a short drive away. January and February look almost as crazy. Medical education work in San Francisco, La Jolla, Springfield, MO, and Washington, DC, and pleasure trips to Ireland and Costa Rica. I am glad to be well enough to do all this traveling.

When I am in town, I am busy seeing patients and doctors and family.

I am left doing much of my reading and writing on planes and in airport these days. Thank goodness for my MACBOOK AIR, though the solid state hard drive is getting pretty full.

Let me bring you up to date by starting with my trip almost two weeks ago to OSU for my ibrutinib trial Clinical Trial NCT01217749.

I could not get out of the CT scans without risking losing my spot in the trial. That made the decision easy.

I refuse the dental x-rays, the body scanners at the airport, and whatever I can, but in one day I have essential five sets of CT scans. It is a small price for access to ibrutinib.

If my biggest complaint is the excessive CT scans and travel needed for the trial, I must be doing rather well.

My news from Ohio and the ibrutinib trial was super.

On the too many CT scans Oct 19,  they found no enlarged cervical nodes. Nothing at all. Nada. Rien du tout.  This is a huge change for the better.

The largest axillary node had shrunk just a little to 2.1 x 1.3 cm and was the only node >1.3 to be found.

The chest remained free of adenopathy as is the usual case in CLL in general and me in particular.

The gut and pelvis is where I had had massive nodes before. The largest node, portal caval, (near the large vein draining the liver, a common site for cancer laden nodes), is still entirely too big at 4.4 x 0.9 cm but it had shrunk from 5.5 x 1.5 cm since June. That is about a 50% drop in area in 90 days. Still a ways to go, but that bad boy had started at 7.3 x 3.3 cm in March. It is less than 20% of the size it was when I started on the trial. One particularly nasty mesenteric node that was over 10 cms six months ago is now only 0.9 x 2.4. No wonder my tummy feels lighter.

And thankful, no surprises. No secondary cancers lurking in the kidneys or liver or lungs. Friends have not been so lucky as I have shared on prior posts with unwelcome findings on the scans.

Well, there is was actually one small surprise, not completely unexpected. My spleen is growing back. This is not of any clinical significant, as my ITP remains well controlled with cyclosporin and IVIG, but will need to be watched. More on that subject later.

Physical exam and blood pressure are all what you want them to be: boring.

Labs are normal except for a mild anemia.

I am hardly cured or even in a complete remission, but every single node has shrunk each time it has been imaged, and by any definition, I am in a deep partial remission.

Ibrutinib seems to be continuing to perform as it best publicity suggests it should for the majority of those in trials. It decreases the tumor burden at a slow and steady by shrinking the nodes where the cancer is most active and productive, and certainly in my case, most prominent. I never had very high lymphocyte counts, but had massive painful nodes. There is every reason to believe, based on those ahead of me in the study, that this painless cancer shrinkage and control should simply continue for who knows how long.

In three short months, my visit to OSU will include more CT scans and a bone marrow biopsy, then the OK to roll over into the continuation trial.

So to celebrate I stopped at the Rock and Roll Hall of Fame on my way home via Cleveland, and spent half my too short visit at the Beatles display. A splendid time was had by all. I highly recommend it.

Rock and Roll Hall of Fame, Cleveland. Ohio

More soon with the truly wonderful news and pictures from my daughter's, Heather, wedding last week in Chicago.

Life is good.

A great middle eastern meal with an important and kindly MDS expert and the amazing Diego Rivera mural and more at the Detroit Institute of Art await this weekend.

But honestly, I would rather be at home reading and writing and walking on the beach and eating organic raw food.

More good news

I am too tired and time constrained to share any of the details, but let me just say that five CT scans later, my lymph nodes have continue to shrink in a significant way and my counts and chemistries remain stable. All very good news.

All the travel is wearing on me, but I hope to fill in the details of my continued clear and positive response to ibrutinib in the trial at OSU sometime soon.

The Risks of Too Much Testing in CLL

As those of you know who follow my chronicles know, I have been plagued by a cracking irritating noise in my right ear associated with a congested feeling for months now.

While steroids gave powerful if temporary relief, nothing has solved the problem. It seems each doctor who checks the ear sees something different. The diagnosis ranged from a serious infection to a completely normal tympanic membrane with a few stops in between at a dull and retracted eardrum.

Here I valued my family doctor’s evaluation more than that of the less experienced “ear-looker-at-er”, my CLL guru, and in the end, relied on the the findings of a otolaryngologist.

When we doctors look in your ear, we are using one eye therefore there is no depth perception. That can lead to a misreading of what the anatomical landmarks are telling us and as a consequence, a misdiagnosis. Minor findings seen on the otoscope can be over-interpreted and lead to unneeded therapies.

When I saw my ENT specialist, he told my ear looked great. So I asked “ Then why the crackly noises and stuffy feeling? ” He wasn’t sure but he also wasn’t worried. Often in medicine, it is much easier to tell a patient what they don’t have than what the do. We can reassure our patients and ourselves that the chest pain is not angina from the heart, but darned if we know what is the true cause.

This brings me to revisit another old theme.

Patients come to the office for two very distinct problems.

The first is that they want relief from the symptom- the pain or itch or nausea or depression or a thousands other “chief complaints.” Chief complaints or CC- that’s what we healthcare providers call them in your medical chart.

The second very different motivator that leads to a doctor visit is the need to know that the presenting symptom is not something serious. “ Doc, I don’t want you to remove that mole. It is not causing me any problems. Just tell me that it isn’t cancer.” Or  “ Is it normal to feel my heart beat in bed at night?” Or “ Why am I hearing this funny noise in my ear?” And a thousand more concerns and worries that need to be assessed and offered reassurance more than relieved.

These are disinct problems, and the wise practioner must recognize what the patient is asking for and meet that need or the encounter will not be satisfying for either party.

I wanted the reassurance. The noise itself is trivial, but was I missing a clue to a more occult issue?

Because of my CLL, my specialist did a tympanogram and demonstrated that my drums bilaterally were responding to changes in pressure in a normal and symmetrical way. That suggested no serious pathology. The big surprise was my hearing test. It was nearly perfect, at all frequencies, in both ears. This was a welcome and unexpected finding in a baby boomer. When I think of my teenage years when I stood inches away from the giant stage speakers at a Led Zeppelin or Janis Joplin concert, and woke up with ringing ears the next morning, I am truly amazed that I suffered no permanent damage.

The ears-nose-and-throat man can see where my internal auditory canal (IOC) ends at the eardrum with his otoscope and where it begins my looking up the nostril with a different specialized instrument, but he can not asses what is in between.

That is why he ordered an MRI of my IOC. With contrast to enhance any tumor.

And here is where my tale of too much knowledge gets interesting.

A few days ago after physical therapy, and before a memorial service where I gave the eulogy (see post Jennie Lynn Taylor) followed by a CLL support group meeting, and ending with packing for travel the next morning, I squeezed in my imaging test. The radiologist reading my study is an old pal, so he shared the results with me. Another of the unabashed perks of being a staff doctor.

My IOC was patent (open) with no tumor or inflammation or fluid.

Great news.

BUT…

My right mastoid that should be fully aerated and thus appear black on the scan as did the left side instead instead had a mottled appearance reflecting fluid and swelling in the air cells. It wasn’t subtle. It was obvious.

Mastoiditis he said! A dreaded infection, usually of children, that can lead to major surgery, nerve damage, hearing loss, and life threatening abscesses and brain infections. I have not seen a case since I worked on the ENT floor of St. Justine pour Les Enfants in Montreal as a med student at McGill.

Could my suppressed immune system allowed some weird organism to slip into my bone and take up a hostile and damaging occupation?  

This demanded action. Or did it?

Read my last post on worrying to see how I was coping.

You see it just didn’t add up. My ear was pain free and functionally normal. I wasn’t sick and hadn’t been sick recently. There was no tenderness or redness or warmth or fever.

I called to consult the doctor who had ordered the scan and they arranged an appointment later that same day on my way home from the memorial service.

He took one look at the MRI and reassured me (exactly what I needed) that is a non-event that he sees all the time. Sure the mastoid air cells are different on the right, but this could represent old minor damage from childhood infections or allergies or nothing.  Not a chance that it is some weird bug because there is no involvement of my ear canal and no free fluid. Why the right side only? Why has become symptomatic now? He has no idea, but he also has no worries, so I won’t either. 

Apparently MRIs are notorious for over diagnosing mastoiditis. Who knew? My ENT colleague gets too many calls from the ER or worried neurologists or family doctors about exactly this same non-issue.

So here’s my point, as I try to decide about whether to go ahead with my CT scans next week. Will they find another red herring on all those scans that will demand further workup to “rule-out” that it is nothing to worry about. Well I wouldn’t ever have worried if you hadn’t done the imaging to begin with. Much ado about nothing.

You order enough labs, x-rays, and other tests and sooner or later you are bound to find something, but does it mean something. As my pseudo-mastoiditis case revealed, often it doesn’t.

This is another cost of knowing too much, and too little at the same time.

Moreover as to my upcoming CTs, the size of my internal lymph nodes measured by the scan will make absolutely no difference in my own care. My suspicion is that it will also make little in any difference in the final study data as long as I get the exit CT scans and bone marrow biopsy in a brief three months from now. Others might disagree. The scan might find an unexpected non CLL growth or problem. While the yield on secondary cancers is small, it can be life saving for those few. I can count a half a dozen friends among those who are alive today with exactly this scenario.

My tendency is not to look for trouble. I am no diagnostic nihilist, but how many CTs do I need?  This recent brief scare with my MRI  “finding” is another reason to think twice about this testing.

Tests need to be reasonably expected to make an impact on how the patient or the disease will be managed. There is no role for curiosity, especially when we are talking about procedures that care some  small long term risk (see prior post on CT scans and secondary cancer).

In the big picture, the fact that I can focus in on such passing details such as the risk/ benefit of imaging is testimony to the fact that I am doing so well on the ibrutinib.

Labs are rock stable and energy is picking.

Life is good. Off  to Ohio in a few days to pick up more magic grey pills.

Eulogy for my Nurse

I will not keep revisiting this topic, but let me share one last time how I said goodbye to my wonderful nurse at her memorial service.

EULOGY FOR JENNIE LYNN TAYLOR

Thank you for the opportunity to expression my love and joy of having been able to work with Jennie over the last 20 years. My feelings and experience are not unique and other members of the St Jude family could have told their own wonderful stories about Jennie. In fact, I have borrowed some of my words from the remembrances and stories shared by Drs. Rhodes and Luecha and PA Kent Stout at a service at our office last week.

It is a singular honor and privilege to be able to say this goodbye to her in front of her friends and family and an even greater honor and privilege to have known her and watched her grow personally and professionally over the last two decades.

I so wish that I were saying this at her retirement party and not a memorial service.

For those of you who don’t know me, I am Dr. Brian Koffman and until my own personal health challenges with cancer some four years, Jennie was my medical assistant. We spend hours together five and sometimes six days a week for over two decades. I often told her and others, that she was, after my wife, the most important woman in my life and many days I spent more waking time with her than at home with my family. The relationship has been less intense with my illness and my subsequent absence from the office, but she remained an old and trusted friend and comrade. She was the only one that could give shots to my kids or my wife or even me. My family is all devastated by the loss.

Together for so many years we did the work that she so loved and was so skilled at - helping those who were sick or afraid or just trying to take of themselves. She was so reliable, so smart, so responsible, so gentle, so patient, so prescient, anticipating my and the patients needs for most visits and making things run so more smoothly for both the patient and me. She was such a fast learner. You told her something once and she nailed it. My co-workers and I all honestly believed that if her circumstances had been more fortunate, she could have been anything: a nurse, a physician assistant or a doctor.  In fact, she was always capable of more than just following complex medical orders. She was capable of giving them. The doctors in our group quickly learned that when Jennie had an insight or suggestion about a patient, you better listen. She had a sixth sense of people combined with an unbelievable memory for details that made her a master clinician. So many times when I was about to walk into a patient’s room, Jennie would pull me aside to remind me that the patient’s granddaughter had recently had a serious illness or that the patient nearly fainted six months ago when having blood drawn or that the patient admitted to her that she was afraid or overeating or a million details that I had forgotten or would never get to know.  She had an ability to hone in on what was important and not only make me aware, but make sure the patient understood the process. She took the extra time and never shunned the trying tasks of explaining the most complex medical issues in simple terms that young and old could understand. That skill takes the rare combo of smarts and caring, both of which Jennie had by the boatloads.

She remembered everyone and greeted them all with a smile and a friendly word. She made everyone feel important, heard, appreciated, and cared for. It was no act or technique. It was because her tender soul did care. It was who she was. Despite her own struggles, despite her often failed efforts to build bridges, despite her repeated and often frustrated attempts repair a broken world, despite her own vulnerabilities, she continue to give so much heart and soul to each “sacred encounter”. She put others’ needs ahead of her own, soothed their pains first before caring for herself. She was there for her patients and touched their lives in meaningful and unforgettable ways, a natural, gifted and hard working healer attested to by those who took the time to come here today and by the hundreds of notes and messages from patients who are devastated by our loss.

We were a team. She organized my scattered schedule, kept me accountable, and reminded me of my obligations. More than that I trusted her judgment and her reliability. She pointed me in the right direction. Her skills were complementary to mine. Her strengths covered my weakness. 

One of my patients said tearfully that she was my partner, my right arm. And she was.

Although recently we have not worked as much together, Jennie may have become even more important to me and my patients. In my absence, she answered their questions and concerns, when appropriate, by herself, and when necessary by taking them to one of the providers. She got the critical messages to me and from me. She has kept my connection alive with so many of them.

Another patient called her my surrogate. And she was.

Jennie had other special areas of expertise. As a proud ex-smoker she helped so many others join the reformed tobacco users club. She did this on her own time and on her own dime.  This was more unpaid work for her, but she was on a mission

Jennie’s was also a valued and friendly coworker at the medical group. She always went out of her way to greet people. Almost the entire office is here today as are many former members of our staff, because they want to honor Jennie. The staff in their hearts remember and still hear and see her frequent laugh and smile, appreciate her efforts to connect with everyone, even those full of hurt and anger. She knew words carry meaning and chose her carefully to avoiding causing anyone pain, directly or inadvertently. She was a trusted confidant that could protect a friendship, keep a secret and honor a debt. She wanted everyone to share in any potential joy. Let me give you a concrete example that demonstrates the detail she went to. With my frequent absences from the office, she would always put money in the office lotto pool in my name when the jackpot got huge, so I would share in the big winnings. And although neither of us or for that matter, any of the medical group ever became instant millionaires, Jennie wanted to make sure that I was not left out in the cold should the ship come in.

As I move forward without her (I still can’t believe that’s she’s gone), I pledge to incorporate her virtues into my work as a healer- her personal touch, her smile, her memory and her attention to personal details. This is a way I can keep her alive as part of me as long as live. I will take her into my heart and my deeds. May I humbly and gently suggest that you might consider doing the same. Take one of her strengths, one her virtues, and make it your own as a way to honor her memory.

As time goes by, I and all of us will focus more on her life, not just her untimely death. We will celebrate that life, the joy she brought us and our extended family and her co-workers and our patients. Her life will be her legacy. The pain of the recent tragedy will fade and the abundance of the gifts she brought to all of us, will be what we will cherish and recall. I am not there yet. I suspect neither are many of you. It is not something that can be rushed, but we will get there.

Finally, I believe with all my heart and with all that I learned from more than seven years of a death struggle with cancer, that we are all in this together. Sometimes it takes a tragedy, a rending of our family bonds to remind those of us that are left, shattered though we might be, that we share a common humanity and at least by my belief, a spark of the universal, a shared divinity. Jennie is still alive in our memories and her influence.

I will finish with a very short Hebrew blessing for those in mourning.

Zihrona l’vrahah May her memory be a blessing.

Worrying

I am revisiting an old theme on worry and decision making. Maybe it is the recent death of my dear dear friend that evokes my need to again look inward. Old themes for me, but I needed a refresher course in mindfulness.

When we have cancer in general and CLL in particular, it is easy to imagine that any minor issue represents the tip of an iceberg that is going to sink our ship.

At least it is easy for me.

I can worry that my clogged ear could be due to a salivary or lymphoid tumor compressing my right auditory canal. Odds are way against it, I am not  really too concerned, but still my ENT wants me to have a MRI and it is scheduled tomorrow.

Could my pain in my calf on the elliptical trainer be from a sore muscle or is the first warning of a blood clot? Worrying minds want to know.

Is my occasional cough a well recognized side effect of my blood pressure medication, or is it telling me to get a chest x-ray to rule out something more sinister?

Is my rash dry skin or an early infection? What does this or that pain mean?

I suspect that I am not alone in these mind games. Don't we all let our fears gallop ahead of us?

It is so easy to catastrophize when we have cancer.

Mark Twain is quoted as saying:

"I have suffered a great many catastrophes in my life, most of which never happened."

Still we are admonished to stay vigilant, so cultivating the place of awareness without the worry is the goal.

Aware and calm. That is the sweet spot.

Some tricks to getting there include recognizing that most bad things progress, so anything with ups and downs is likely not the grim reaper sending ahead a search party.

With the critical exception of infections in those of us who are immune compromised, most bad things are bad from the get go and waiting a bit of time does not often change the final outcome. A delayed diagnosis is almost never fatal mistake.

So I do my best to acknowledge and then gently dismiss most of my worries and only check things out when they hang on and on or they get really annoying. And I remained detached. As best I can.

Another place that we must cut ourselves some slack and show ourselves some compassion is the worrying we do about our choices. In CLL, we are blessed to have some time to ponder and consider our decisions. But that extra time can give us a chance to over analyze and agonize.

This doctor or that cancer center?

This supplement or that diet?

CT scan or no CT scan?

FISH or cut bate?

Watch and wait or treat early?

FCR or BR or a clinical trial?

Transplant or CAR-T?

Is it safe to travel to Kenya or China or next door, eat sushi or drink grapefruit juice, visit the sniffly grandkids or a friend in hospital?

These questions big and small never stop, but the second guessing should.

None of us nail it every time. CLL is a slippery disease and it is constantly morphing. Even the big name gurus famously can't agree on much.

So let us forgive ourselves when we make what might seem at least in the short term to be a wrong move, and simply learn from it and move forward.

Congratulate ourselves on the good choices. We are still here, aren't we? We still have choices, don't we. The real trouble begins when we run out of options.

So the uncertainty is a good thing. The only things that are completely ordered are dead or divine, and although I believe we all carry a spark of the holy inside us, we are all fallible and faulty. Heck, we have cancer, the poster boy for chaotic dysfunction at the cellular level.

Still we are bumbling our way forward, groping for answers. The path ahead actually looks wider and brighter with more options coming online at an increasing pace. New therapies such as ibrutinib (PCI-32765) or GS1101(CAL 101) or CAR-T or new MABS open more possibilities and even more decisions.  This is all good,

We need to share our experiences, good and bad with each other because we can't do it alone.

After all, we are all in this together.

The Cup

The picture speaks for itself