Dealing with "this mental roller coaster"

Here is what I believe is an important exchange between me and a friend with CLL.

I think it a critical teaching for anyone in a health crisis, including myself.

I am very grateful to the letter writer for allowing me to pause and formulate a response that I hope helps him and I know helps me.

This is looping around old themes, but sometimes I am a slow learner or I just forget what is important and what is not.

Brian

On a personal note - are you aware of any studies that have been done or help that may be available for those who have been on this mental roller coaster? When on "high alert" the other things of life tend to get shoved aside. Now that the alert level is lower it's as if I don't know how to behave.
The transitions between high alert stages and the low alert stages take too much mental energy. I need to find a middle ground to function in.
Any thoughts?

W

My response:

W

Boy oh boy do I hear you loud and clear. Shifting gears from crisis to normal is tough.

I bet there are studies. I just don't know the data.

If it's overwhelming, see your doc. He can help with counseling or even meds.

But I bet you can by with this plan:

My advice is to under react to everything, the high, the lows.

Don't get too excited by the good news and give yourself time to digest the bad news.

CLL is big actor is life's drama who may try to steal every scene, but it is not the lead performer.You are. You are also the director and the producer. You get to decide who gets the spotlight and the most attention. You can focus on the ones you love and the good works you do and your faith in a greater power and purpose. You can get lost in the joys of trivial pursuits or lofty projects. It's all OK.

You can't control the rascally CLL as much as you would like, but you can control how you react to its hamming it up. Believe me. I am dealing with a few very hard knocks myself these days, and I am just collecting the data, chatting with my friends using my support network of other CLLers and trusted confidants, and cooling my heels before I make a move. Under react.

Trust me on this. This is a great teaching I got from a very dear friend, a doctor who has fought and won a big cancer battle in his life. Under react. Take some time and get some distant. Let things digest. CLL is almost never urgent.

Love is urgent. Family is urgent. CLL is not urgent.

Stay strong

We are in this together

Brian

Coping with Cancer: Living with Leukemia and Lymphoma

Friends,

Like my hero, Chaya Venkat at http://updates.clltopics.org/ I have avoided selling anything through my website or promoting anything more than a bone marrow drive or a worthy charity.

I am now going break that rule to make a heartfelt sales pitch for a project that I was involved with in an effort to help fellow CLLers or those with other cancers.

For the last several months I have been working with my friend, Dr. Larry Deutsch an international renowned hypotherapist.

Like me, Dr Larry is a Canadian family doctor. Like me he teaches other doctors. Like me, Dr. Larry has needed to change the nature and scope of his practice because like me Dr. Larry Deutsch has CLL.

We have been collaborating on an audio file that uses his expertise and empathy and my knowledge of the disease from the inside out to help patients cope and maintain a calm sense of control with the diagnosis of leukemia and lymphoma in particular and cancer in general.

I believe that the MP3 that we produced is strong medicine. Larry is a powerful hypnotherapist with an important message.

Let me be clear. We are not promising a melting away of your cancer by a sheer act of will. We are not promising any cures. We are simply trying to build your confidence in dealing with a process that can often feel overwhelming.

Dr Deutsch did the heavy lifting on this project, but I am very proud of the part I played and very happy with the final result.

Please listen to a sample on this webpage.

Please download the MP3.

You will be glad that you did.

Every sale will generate a donation to CLLPAG in Canada and LRF in the USA, two important organizations that help the CLL and lymphoma community. I have worked with them both. Their conferences are first rate and important to many patients and caregivers, but they could do so much more with more support.

We all do so much better when we can get some help that allows us to slow down, and let go of the stress.

As I have been known to say, we are all in this together.

Hope my readers are OK with this bit of a commercial, but I am a believer in getting behind what you believe in and I do believe that how we cope with our cancer plays a role in how we do with our cancer.

I will publish more links to ASH videos over the next few days, and some stuff on 11q deletion, but tomorrow I leave for a conference on CME in Orlando for a few days.

Getting closer

I am fully approved with my authorization numbers for the consult with Dr. Byrd at Ohio State to see if I qualify for the trial. Hard to imagine that if my insurance OK'd the consult to see if I was appropriate for the trial they would give me grief about enrolling in it if Dr. Byrd so recommends.

I am feeling pretty confident that Blue Shield, OSU, my docs here and I are all pulling our oars in the same direction now and it will all work out.

The reams of medical records as PDFs, photocopies, and on disc are slowly coming together.

Hotel is booked. Rental car will be done tomorrow.

My bone marrow biopsy FISH showed my 11q del in an estimated 11.5% of my cells. Surprisingly, this is the first time over the many years at UCSD at Kipps's lab or at City of Hope with all my blood tests, bone marrow biopsies and even the removal of the huge mass of CLL cells with my splenectomy that the FISH has confirmed my original finding of 11q deletion at time of diagnosis. That is a matter for a much longer post, but it will have to wait until a time I am more awake.

With the patient help of my son Ben, I have made good progress on getting the ASH videos online and they should be available by next week. I am very pleased with the project to educate primary care providers about CLL and transplants.

Watch here soon for more on a link to an audio file on handling the stress of CLL with hypnosis. Another project I am very proud of and one that I hope will not only certainly help those who listen to it, but will also raise a bit of money for CLL research. More later. I promise.

It's all getting closer.