Drip, drip, drip…

I am not sure there is such a thing as “Chinese Torture”, or that it consists of slow dripping of water - one drop at a time without end until it drives the victim crazy.  Sometimes I think CLL can be a good substitute for such diabolic torture. Sure, you are diagnosed with this incurable cancer.  But the doctor did say it is a “good cancer”, right? And it is invisible, in the sense there are no obvious signs of cancer that anyone can see - at least during the early stages.  You go to  the trouble of getting all the prognostic testing done, and your local oncologist is no wiser about your likely prognosis, he says it is all inconclusive anyway.  Incurable. Invisible. Inconclusive. Sounds like drip, drip, drip to you?

I get a lot of emails (and I mean a LOT of emails) from recently diagnosed patients trying to come to grips with this darned disease.  After the initial euphoria has worn off - the doctor did say it is a good cancer, you are not going to drop dead right away - the next stage is confusion.  Surely, there must be something to do, something that will change the outcome down the road?  Should the doctor be giving you something to hold the CLL at bay or even roll it back?  Are there any herbal potions you should be considering, or drastic lifestyle changes that can make a huge difference?  Doc says no, you are in Watch & Wait, nothing to do but wait.  And worry.

You spend a lot of time reading everything you can find on the web about defeating cancer by positive thinking, by potions, by herbal cocktails, by leading a blameless life.  You spend a small fortune and religiously swallow a fistful of pills and capsules each day.  You give up all your favorite foods, forswear steak and settle for only raw and organic produce that gives your stomach the heebie jeebies. Maybe this will slow down the CLL?  Maybe the next blood test will show an improvement in the white count?  Is it enough if the count goes down from 32.8K all the way down to 31.6K? (Not!) Maybe you will be the exception, the patient with aggressive markers that goes into total remission - dare we say, CURED of CLL?  This is the denial phase.

Then reality sets in.  All that hassle, all that money, all those pills.  And the white count keeps going up, and / or the pesky nodes keep getting a little bit larger each month.  You start feeling a little run down, not quite as perky as you used to feel. Blame the dropping red blood cell counts and hemoglobin levels for that.  Perhaps you had made the decision not to tell anyone at work about your CLL diagnosis.  Job situation being what it is, who wants to advertise a health issue like this?  Perhaps you were foolish enough not to share the news even with your immediate family.  You carry the burden of knowledge all by yourself.  No one knows why you have been dragging your tail recently, why you are grouchy at times and why you are no longer the life and soul of the party.  You get a lot of grief for your “bad moods” and no sympathy at all for being the victim of an incurable cancer.  This is the resentment phase.

Drip, drip, drip .. little by little things have gotten to the stage where Doc says Watch & Wait is over, it is time to treat.  Phew.  Finally, you are going to get some action.  So, what is the therapy Doc?  What are the chances it will cure me?  Big deal, I know I may lose my hair.  Who cares.  Just so long as I get this monkey off my back once and for all. So, what is the game plan Doc?

Not so fast, says the doctor. There are no curative therapy options for CLL.  None of them will actually cure you.  Some will roll back the CLL for a bit longer than others, but most often at the expense of more serious side effects.  There is no free lunch, relapse is not a question of “if”, it is a matter of “when”. Not to worry, we can keep trying different things, go to the next therapy option when the first one fails and so on.  Until we run out of bullets, of course.  But if you are long in the tooth, the classic “elderly CLL patient”, you may actually get lucky and run out the clock on this nasty disease.  Isn’t that just GREAT?!

And yes, there is a bit of good news.  You won’t be losing any hair you have not already lost!  Unlike many other cancer drugs, the drugs used most often to treat CLL do not cause hair loss.  You can keep your pride and joy, your full head of hair, while sitting in the infusion chair in the doctor’s back office.  Might make it easier to flirt with the nurses.

That’s it?  Keep trying a series of therapy options until time runs out?  That is the game plan?  And the whole thing laid out by the doctor in less time than it took you to read this article thus far?  Where is the respect?  Where is the gentle hand-holding for the patient stricken with an incurable cancer?  Where is the solemnity befitting the occasion?  Damn it, how come we are always getting the short end of the stick?  The next phase emotion -  bewilderment - sets in, as you try to figure out what to do next.

You are not alone

Below is the abstract of an article that outlines in more formal terms all that I have described above.  If you think it will help you read about other real life patients who have gone through the same spectrum of emotions that you have endured thus far, you really should try to read the full article and not just the abstract. Send me a personal email and I will be happy to help you locate it.

Eur J Cancer Care (Engl). 2011 Aug 31. doi: 10.1111/j.1365-2354.2011.01278.x. [Epub ahead of print]

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication.

Evans J, Ziebland S, Pettitt AR.

Health Experiences Research Group, Department of Primary Health Care, University of Oxford, Oxford Royal Liverpool and Broadgreen University Hospitals NHS Trust, Liverpool, UK.

Patients with chronic lymphocytic leukaemia (CLL) find it hard to accept a diagnosis of an incurable cancer for which no treatment is recommended and which may not cause symptoms for many years. We used qualitative interviews with 12 people with CLL managed by watchful waiting, drawn from a maximum variation sample of 39 adults with leukaemia, to explore accounts of watchful waiting and implications for clinical management. Patients with CLL recalled being given little information about the condition and wanted to know more about how it might affect them in the future. The invisibility of CLL meant that some chose not to disclose the diagnosis to others. Check-ups sometimes felt cursory, causing dissatisfaction. As symptoms increased, lifestyle adaptations became essential, well before treatment was warranted. Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts. We relate our findings to perceptions of the illness state, doctor-patient communication, and work pressure. We recommend that specialists could better support patients by acknowledging psychological impacts of CLL, actively listening to patients’ concerns, and meeting their needs for information.

PMID: 21883563

Somethings we can influence..

There are many things in life that we cannot change.  CLL diagnosis is one of them.  But some of the loneliness, confusion and bewilderment can be changed, can be improved.  As this article suggests, doctors and specialists can learn a little bit more about the psychology of this disease and how it impacts doctor - patient communication.

And there is something you can do too.  Forget the snake oil, the quick fix solutions even you know are not going to work.  What works is credible information.  People feel better when they get back a little bit of control over their lives.  Information - credible, trustworthy, verifiable - that is what is going to give you back your sense of being in charge of your own life.  There are no cancer gurus out there that are going to make it all better.  Only you can do the heavy lifting of reading, understanding and internalizing the information you need to make smart decisions.

No man (or woman) is an island.  We need each other to survive, to thrive, to deal with things that go bump in the night.  If you have not told your employer about your CLL, that is one thing.  But not telling your family?  That may not be such a smart move.  Caregivers are an important part of your support system.  More often than not, the emails I get are not from the patient himself, it is from someone in his family that cares, that wants to learn, that wants to help.  Don’t push people away, don’t isolate yourself just when you need their love and support the most.

If you are the caregiver reading this, I want you to know I have walked in your shoes.  It is not an easy thing to do.  There will be hurt, there will be pain as you watch the progress of the disease in someone you love.  But know this too.  Without your help, it will be a lot worse.  Without your love, it will hurt a lot more.  You can make a difference, whether or not it seems so right now.  We are all our brothers’ keepers.

“We can live without religion and meditation, but we cannot survive without human affection.”

“Whether one believes in a religion or not, and whether one believes in rebirth or not, there isn’t anyone who doesn’t appreciate kindness and compassion.”

-Dalai Lama