Thursday, February 9, 2012

Our Cancer Journey - Week 8

Kathy finished Cycle 3 of Adriamycin/Cytoxan, has weathered the most difficult treatment symptoms, had a positive rebound of her blood cell counts, and continued to receive an outpouring of support from the community.

Per the screen print above from BIDMC's web-based Online Medical Record, her neutrophil count increased from 3610 to 5660, ensuring she can fight infection.   Neutrophils are significantly affected by chemotherapeutic agents but Neulasta, a bone marrow stimulant, prevents cancer patients from the neutropenic nadirs that once caused multi-day hospitalizations requiring antibiotics.

Dr. Robin Schoenthaler, a Radiation Oncologist in the MGH Department of Radiation Oncology at Emerson Hospital and Director of Medical Education  at Emerson wrote to me with very helpful advice for husbands and families supporting breast cancer patients:
"I am a radiation oncologist at MGH specializing in the treatment of women with breast cancer and I have been following your blog (from which I heard about that very cool I-phone charger; thank you very much!) for some time.  My heart goes out to you and your wife.  I hope that things go as swimmingly as possible for you during and after the acute phase of treatment.

I have many many thoughts about what you have written; but yesterday's column which touched on the issues of 'causality' rang a real bell for me in three areas.

First off, it may interest you to know that, as far as I can find,  there are no good studies that absolutely link breast cancer (or any cancer) with stress.  Studies looking at extreme stress (eg war, famine, rape) have not shown a clear-cut link with the later development of cancers.  Studies looking at day-to-day stressors have been negative, and studies evaluating severe stressors (recent divorce, death of loved one) are extremely mixed -- some show perhaps a small link and some actually show that severe stressors are associated with a LOWER rate of breast cancer (eg the Women's Health Initiative).  This stuff is terribly hard to tease out so all we can say at the present time is that while there MAY be a link, and although there are hypothetical reasons to be concerned about a link, thus far many good studies do NOT show an absolute connection between being under stress and then getting breast cancer.

This may well be because 'cancer' is such a heterogenous disease, and it may also be related to the fact that cancers grow at such different rates, so that it's nearly impossible to say that a defined 'stressor' (and who can say exactly what stress is -- for some people it's their mother-in-law!) is linked to a very slow-growing breast cancer (or a fast one) or a lightning-fast lymphoma.  It's just too hard to connect the dots.

The second idea I would like to convey to you is that your search for a cause -- wondering if it's paints, or stress, or radicals (or for other women: fertility treatments, or living under power lines, or pesticides) is a specifically AMERICAN response to disease, or more fundamentally, why bad things happen to good people.  If you and your wife lived in India, you would probably think this disease occured because of something harmful you did in a past life prior to this reincarnation (karma, etc).  If you lived in Mexico, you might well think your wife was bound to suffer this way so she could offer it up and then sit at the right hand of Mary in heaven.

But here in America, we always, always, think it's something we did.  We think we are the cause.  We ALWAYS think we are the cause, and if only we had done x or y or z maybe this wouldn't have happened.  We like to think we are in control, us Americans (especially the engineers and computer people amongst us, despite the fact Mother Nature that is constantly showing us who rules.

I do think this is an important thing to think about -- maybe it wasn't environmental, maybe it had nothing to do with behavior, maybe it was just stone cold bad luck.  I think it changes the way one approaches disease sometimes and I offer it to you as a possibility.

The third thing I want to say to you is that you are really being a model Husband/Caretaker, and my hat is off to you and to all such wonderful men.  I call men like you 'Purse Holders' and in fact I wrote an essay in the Globe about them a couple of years ago.  If you care to read it you can find it here.

I send you my very best regards and wishes, and if you would like to further discuss these or any other breast-cancer-related issues or questions, please consider me your go-to person."

Thanks Robin, your support is much appreciated.  And you're right, since treating breast cancer is a partnership, all aspects of treatment including the driving, the listening, and the purse carrying are a shared responsibility.

On Sunday, I must fly to China to fulfill a promise I made a year ago to assist with healthcare IT design in Shanghai and Hong Kong.   My absence is timed for those treatment days when Kathy is at her best and her energy has returned.   I'll be back before the symptoms of Cycle 4 begin.    I'll write my post next week during the first time we've been apart overnight since her diagnosis in December.   As we travel the treatment path together, the experience of caring for Kathy long distance will bring new emotions.


Medical Quack said...

What a great radiation oncologist you have and what wisdom he has, I think your wife has the care of the best. The "American Response to Disease" he stated can't be more right on, as I see that all the time in doing my little blog by all means.

The folks at Komen would do well to read this too with all their recent press as there's something to learn here for sure.

Thanks for the updates and sharing as we all learn and it's also reminds us to take a step back and rethink our values in life and not get caught up in the search for finding absolute causes for everything as we may never have all the answers and sometimes get dealt a bad hand as the oncologist stated,and with that I hope her care and treatment is nothing short of a cure and we all can learn some important lessons here from both of you on what human life is all about in these hectic and unpredictable times we live today.

Erinachara said...

Dr. Schoenthaler makes an excellent point, as beliefs about causative factors do vary across cultures. Our American faith in science and technology makes us believe that there must be an identifiable cause and therefore preventive action that could have been taken. Unfortunately there are few facts that support that scientific belief and so it is in effect equally true and/or false as the karma or Virgin Mary theories. It is not just patients and their families that suffer from the delusion, though. I have often heard physicians more than willing to jump in and blame the patient, or the patient's "lifestyle choices" for their disease or condition. That is not particularly helpful in healing or making the patient more at peace with the situation. I wish more physicians had the awareness Dr. Schoenthaler has expressed.

I would also like to commend you for your careful caretaking and concern for your wife, and for sharing as you have been these last few weeks, this experience of cancer and its treatment. You have been my HIT hero for quite some time, and I am daily more appreciative of your humanity as well. You and your wife and daughter are in my thoughts and prayers.

Janet and Bill said...

John, after reading your Week 7 I have been thinking all week on how to comment. I decided at the very beginning of my cancer journey that I was not going to get caught up in the causes. Bill agreed with me even being an engineer. The only thing we did was the genetic testing which was negative. Dr. Schoenthaler has it right and I applaud him. Most of all I applaud you and Kathy for your sharing your most private thoughts and actions with all of us. Thank you.

Hope Ricciotti said...

Despite being more of a geek wannabe, I've started regularly following your Thursday blog. Your partnership in treatment for breast cancer with your wife resonates deeply with me. As an OBGYN, I care for women, and regularly see the care enhanced, the outcomes better, the pain diminished, and the joy enhanced when partners are engaged. While your work in healthcare IT is world famous, your partnership with your wife is inspiring. It is an honor to work with you.