RULE 2 WHAT I HAVE LEARNED My Personal 10 Rules for Staying Alive

A while back I gave my first rule to live by if you have CLL.


Here is my second.


You have time, but you don’t have forever.


CLL is a chronic disease that gives us time to rub our chins, study our enemy, gather our allies, read about what has worked and what has not, check the wind, and plan our attack.


True, there are times when prompt action is called for, such as when I found myself bruised up with single digit platelets from ITP. I was on call for my group when I received an urgent call at home from my exchange that they had a critical lab level on Dr. Koffman. A few hours later I was in hospital getting IVIG and steroids, but that is another story. Moving fast may have saved my life. Similar stories abound for friends with critically low blood counts that needed urgent transfusions and others with serious infections that had to be treated stat. Some secondary tumors such as an aggressive breast cancer demand quick decisions and actions and take precedence over the more pokey CLL.


But these are the exceptions.


Most of the time CLL lets us move carefully, slowly and methodically. We should be prepared, but not usually preemptive and never rash. 


However, there are what Chaya Venkat and others call windows of opportunity that open and also shut.


It is like the stock market. The best time to have bought Apple stock was years ago, not after its big run -up.


Here are three common scenarios that demand we move with alacrity.


The first is financial.


1: 


Sadly pending insurance or job changes can force us to play our hand early. If we are going to be considering treatment in the near future but will have no insurance then, most of us would would not have the deep financial resources necessary to afford therapy. That is reason enough for some of us to move up treatment time.


The next is the most important, the most common and the most ignored.


2:


I tell anyone who will listen that the best time to treat your CLL is a month before you need to. Once our bone marrow is impacted and our counts are too low, many traditional therapies become much more problematic. Once our nodes are huge, many meds can not penetrate as well to get a complete remission and some such as alemtuzumab (Campath) are useless. Once we develop any new problems with our heart or our arteries and veins or our lungs or our kidneys or our even with our psyches, treatment can become much trickier. 


That's why it is important to keep a watch on the cancer. That is why a short lymphocyte doubling time is one of the agreed markers that says time to treat.


Today there may be a new reason to not delay taking action.


3:


Some of the new promising novel therapies such as ibrutinib and GS-1101 have limited openings in their trials, so if we are likely to need therapy soon, and want to have a shot at one of these new experimental agents, we need to watch what's happening with the trials at Clinicaltrials.gov, stay in touch with our support group locally or online and be prepare to move.


Still I would never recommend getting therapy that is not indicated just because an exciting trial is available now and won't be soon.


There is a cost to doing anything. 


There is also a cost to doing nothing.

First of ten Rules to live by with CLL

This is based on the presentation I did at the Niagara Falls CLLPAG Conference where I listed ten rules that worked for me in living with CLL.

These are my rules. They helped me, but may not work for you, and that's fine. Know what is right for you, your spirit, your faith, your energy, your chutzpah, your intellectual curiosity, your level of trust of the medical industry, your tolerance for stress, and your world view.

 Use only what feels helpful and disregard the rest.

I will start with one that anyone who knows me or has read my blog with recognize. Any teacher will tell you, it is good to constantly review the importance principles, so please pardon me if I repeat myself.

This is an oldie but a goodie.

UNDER REACT

Not just to the lows, but also to the highs. I am not suggesting we don't need to express our joy or our worries, that we shouldn't take appropriate action when needed.

I am only saying that we should pause and reflect and react calmly and dispassionately as possible to whatever CLL throws at us.

A cool unemotional look at what needs to be done, which may be nothing, helps you make the most out of a good or lousy hand in both poker and in cancer.

There will be future ups and down. We need to conserve our energy- physical, mental, and spiritual. Everything changes- not always for the better, but not always for the worse either. With change comes a chance to react and act in a new way.

I am not pleading for total equanimity, just that we moderate our responses.

It has helped me immeasurably to live on this wild CLL roller coaster, to live in the moment, and to prepare for the future.

I am continuing to do well in the trial with nothing to report other that a tender pimple on my forehead. Honest!

This should be my biggest problem with ibrutinib.

Avery different Brian Koffman, one that I hardly recognize quoted something like this nugget from Jon Kabat-Zinn.way back on July13, 2008 just a few weeks post transplant, when I was so vulnerable and tender and oh so hopeful.

Do not: COGITATE, AGITATE, AND REHASH

Instead: MEDITATE, ACT, AND BE AWARE

Life goes on.

Under react.

I have never been able to actually find that quote, but if he didn't say it, I bet he would approve it. Maybe I made it up, and like the Zohar, gave it creditability by attributing it to a great author.