A self serving post

This post is self serving but as an exercise in catharsis it is what I need to do so please hang in there with me.

In the last few days I have come to realize that while I am still feeling positive that the double mastectomy was the right choice and that moving forward with chemo as the next salvo in eradicating this cancer is essential I have underlying feelings that are really confusing me.

Despite knowing all of the things that lead us to believe that the outcome for Heather will be a good one I have been experiencing some situational anxiety and, yes I will add, depression. I just don't feel right. This is not normal for me and I hate it.

I am worried about Heather and the pain she is in. I worry about the coming chemo course and how that will affect Heather physically. I worry about the kids; not that they aren't well cared for by Heather and I and all of the helping hands but that they too are worried about their Mom and don't really know how to express it. I worry about the big kids too because I know they are worried.  I worry that some day Heather may miss her breasts. I'm scared too. Scared about all of the things I'm worried about. Heather and I are supposed to have a long and happy life together and we fecking better. 

For years as a Social Worker I was always on the other side of this. Discussing life and death issues with my patients and their families. Young people with bright futures that suffered devastating spinal cord injuries, head injuries, or both. Older individuals who had become dependent on ventilators or lost limbs or suffered multiple trauma. All these things lead to major life changes for all involved and I was charged with helping them explore their feelings and provide them with the tools to become as functional as possible in their new realities.

Thankfully I have been talking to Heather about this and she so wisely reminds me that it is ok to be upset, fearful, afraid. Good...because I am. I am working on allowing myself the opportunity to feel these things, experience them, and talk about them as a mechanism to bring into balance my ability to look forward positively and accept the fact that there is a scary side to all of this and it is ok to acknowledge it.

So if you ask me how I am doing you may not get the quick and easy answer you might have hoped for! I feel better. Thanks for listening now and in the future. Keeping you abreast of my feelings.....Mark

Staying Positive

What follows is a rather wordy discourse that explains why Heather and I are staying positive.

The Median Isn't the Message by Stephen Jay Gould 

My  life has  recently  intersected,  in  a most personal way,  two of Mark Twain's famous quips. One I shall defer to the end of this essay.  The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, lies, and statistics. 

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up  the  items and divide  them by the number of sharers  (100 candy bars collected  for  five kids next Halloween will yield 20  for each  in a  just world). The median, a different measure of central  tendency,  is  the half-way point.  If  I  line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But  half  our  citizens  make  less  than  $10,000  per  year."  Both are right,  but  neither  cites  a statistic with  impassive objectivity. The first  invokes a mean,  the second a median. (Means are higher  than  medians  in  such  cases  because  one  millionaire  may  outweigh hundreds of  poor people in setting a mean; but he can balance only one mendicant in calculating a median). 

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make  an  unfortunate  and  invalid  separation  between  heart  and  mind,  or  feeling  and intellect.  In some contemporary  traditions,  abetted  by  attitudes  stereotypically  centered  on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this  absurd  dichotomy,  often  become  the symbol  of  the  enemy.  As  Hilaire  Belloc  wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death." 

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on  the downgrading of  intellect by telling a small story about the utility of dry,  academic knowledge  about  science.  Heart  and  head  are  focal  points  of  one  body,  one personality. 

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure  to asbestos. When I revived after surgery, I asked my first question of my  doctor and  chemotherapist:  "What  is  the  best  technical  literature  about mesothelioma?" She  replied, with a touch of diplomacy  (the only departure she has ever made from  direct  frankness),  that  the medical literature contained nothing really worth reading.  Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's  Countway  medical  library  and  punched  mesothelioma into  the  computer's bibliographic search program. An hour later,  surrounded by the latest literature on abdominal mesothelioma,  I realized with a gulp why my doctor had offered that humane advice.  The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery.  I sat stunned for about fifteen minutes, then smiled and said to myself:  so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness. 

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer.  We don't know why (from  my  old-style  materialistic perspective, I suspect  that mental states feed back upon  the  immune system). But match people with  the  same  cancer  for  age, class, health, socioeconomic status, and, in  general,  those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my  personal scientific guru and a Nobelist  in  immunology, what  the  best  prescription  for success against cancer might be.  "A  sanguine personality," he  replied. Fortunately  (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner. 

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean?  From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively,  I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb. 

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.   I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different  perspective on "eight months median mortality." The point  is a subtle one, but profound  -  for  it embodies  the distinctive way of thinking in my own field of evolutionary biology and natural history. 

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although  nature  often comes  to  us  as  irreducible  continua.)  This  Platonic  heritage,  with  its emphasis  in  clear  distinctions and  separated  immutable  entities,  leads  us  to  view  statistical measures of  central  tendency wrongly, indeed opposite  to  the  appropriate  interpretation  in our actual world of variation, shadings, and continua. In short, we view means and medians as  the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just  a  device  for  its  calculation,  the  "I will  probably  be  dead  in  eight months" may pass  as  a reasonable interpretation. 

But  all  evolutionary  biologists  know  that  variation  itself  is  nature's  only  irreducible  essence.Variation is  the hard reality, not a set of  imperfect measures for a central  tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because  I  am an optimist who  tends  to  see  the doughnut  instead of  the hole, but primarily  because  I  know that variation  itself  is  the  reality.  I  had  to  place myself  amidst  the variation. 

When  I  learned about  the eight-month median, my  first  intellectual  reaction was:  fine, half  the 

people will live longer; now what are my chances of being in that half. I read for a furious and 

nervous  hour  and  concluded,  with  relief:  ****ed  good.  I  possessed  every    one  of  the 

characteristics  conferring  a  probability  of  longer  life:  I  was  young;  my  disease  had  been 

recognized in a relatively early stage;  I would receive the nation's best medical treatment; I had 

the world to live for; I knew how to read the data properly and not despair. 

Another  technical  point  then  added  even  more  solace.  I  immediately  recognized  that  the distribution of variation about the eight-month  median would almost surely be what statisticians call  "right  skewed."  (In a  symmetrical  distribution,  the  profile  of  variation  to  the  left  of  the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed  if  stretched  out  to  the  right.)  The distribution  of  variation  had  to  be  right  skewed,  I reasoned. After  all,  the  left of  the distribution contains  an  irrevocable  lower boundary of  zero (since mesothelioma can only be  identified at death or before). Thus,  there  isn't much room for the distribution's  lower (or  left) half -  it must be scrunched up   between zero and eight months. But  the  upper  (or  right)  half  can  extend  out  for  years  and  years, even if  nobody  ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran  -  for  I had already concluded  that my  favorable profile made me a good candidate  for that part of the curve. 

The  distribution  was  indeed,  strongly  right  skewed,  with  a  long  tail  (however  small)  that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small  tail, and I breathed a very  long sigh of relief. My  technical knowledge had helped. I had  read  the  graph  correctly.  I had  asked  the  right  question  and  found  the  answers.  I  had obtained,  in  all  probability,  the  most precious  of  all  possible  gifts  in  the  circumstances  - substantial  time. I didn't have  to stop and immediately follow Isaiah's  injunction  to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight. 

One  final  point  about  statistical  distributions.  They  apply  only  to  a  prescribed  set  of circumstances  - in  this  case  to  survival  with  mesothelioma  under  conventional  modes  of treatment. If circumstances change,  the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be  in  the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age. 

It  has  become,  in my  view,  a  bit  too  trendy  to  regard  the  acceptance  of  death  as  something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my  own way.  For most situations,  however,  I  prefer  the more martial  view  that  death  is  the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light. 

The  swords  of  battle  are  numerous,  and  none  more  effective  than  humor.  My  death  was announced at  a meeting  of my  colleagues  in Scotland,  and  I  almost  experienced  the  delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail).  

Still,  the  incident provided my  first good  laugh  after  the diagnosis.  Just  think,  I  almost got  to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated. 

Chemo it is

We found out late this afternoon that the pathology report came back and 3 of the 7 lymph nodes that were removed during the mastectomy showed evidence of cancer spreading to/through the nodes.  This means that Heather will indeed go through chemo to make sure we can get it all.

Heather and I are looking at this as a positive....another measure to make sure she tracks this cancer down and kicks its ass!  

Another positive is that the left breast which was also removed showed no evidence of cancer.

It's all good.  Thank you for your ongoing prayers and support.  Heather & Mark

Home!!!

We are home and two thumbs up!!!

Good morning!

Heather had a great night!  She slept well other than several "gotta go" moments.  She is eating and moving well and Dr. Butterfield said everything was looking great when she stopped by earlier.  

Chances are pretty good that we will go home this afternoon barring any unforeseen circumstances!  

Heather is enjoying her PCA pump (self administered morphine) and the as needed Valium.  The room and personnel at Christ Hospital have been wonderfully attentive and pleasant though we are not eager to see them again anytime soon.  Tata for now!  Lol....I said tata.  Yes I AM a 14 year old boy.  :)

Thanks for the mammaries!

The girls are gone!

Heather is out of surgery and all went well.  The surgeon feels good about the lymph nodes and will have a detailed pathology report for us by Friday or Monday.  This will help determine whether further treatment is necessary.

The reconstruction expander's have been placed and will be the cause of the majority of Heather's pain over the next few weeks.  She won't be able to pick up or cuddle with the kids for a couple of weeks which will be very hard for all of them.  We have been working on other ways to hug by using feet and hands which they are enjoying.

We will be in the hospital until sometime Thursday afternoon unless there is a reason to stay one more night.  Thanks to everyone for the kind words, thoughts, prayers, and general good vibes being sent our way.  Visitors are welcome in the hospital and after we return home.  

Keeping you abreast as always.  Mark

T minus 2 hours

Heather with Merida....my brave girls!  We are all ready to go.  Eager to get this over with and on to the next phase! 

Lose the Tatas, Save the girl...

Someone asked me recently if I had read anything to help me prepare for the loss of my breasts. I have to admit that I haven't really read anything but I have thought about it a lot. My breasts do make up a BIG part of my physical appearance but they do not define me. 

I AM the browned haired girl with cameleon eyes - blue/green/gray with golden stars, and more importantly the girl with her mother's smile. My definition includes a mother, a wife, a daughter, a sister, and a friend. I am an information gatherer and provider. I am a caretaker. I am not my boobs - although I can certainly act like one at times.

And now I am a warrior - ready to head into battle and do what it takes to succeed. For my children, my husband, my parents, my siblings, and my friends because they are, what matters most. So forget the Tatas - let's save the girl with the chameleon eyes and her mother's smile.

Wow!!!

I am pretty sure we have the best family and friends in the world.  Ok...North America.  We have so many people that have changed their profile pictures to pink ribbons, sent well wishes via all sorts of media, mail, deliveries, coming to stay with us, etc.

The book club has established a site for us that helps coordinate needed activities/events for us ( https://mycancercircle.lotsahelpinghands.com/c/705710/ ).  If you have any difficulty connecting please let me know.

Everyone has been so kind and the concern is genuine and overwhelming and we haven't even had the surgery yet! All offers of assistance have been, and will be, greatly appreciated and we will do our best to thank you now, at the time, and afterward because we are so grateful for the love of all.

We are staying strong and positive thanks to all of you!  Trying to keep you abreast of things.....Mark

Is Mercury in Retrograde?!?!

One  of the side effects of my diagnoses is that some of those near and dear have been spurred to get some of those check ups they have been putting off.  One of those people is my mother. After I was diagnosed she decided she should probably schedule a mammogram. And guess what....  She has breast cancer. All I can say right now is what the FURK!!?! I'm a little ticked right now with no one to channel it towards!

Reminder to self - everything is going to be fine!  Just a bump in the road (or mt. Trashmore).

She doesn't have full pathology yet but they are saying stage 0 or maybe 1 and its a slow grower (stage 1).

So I guess my fam could use a few extra prayers and such....

Caring for Yourself: Advice for Cancer Caregivers

This is something I am very familiar with as a Social Worker in my past life.  I used to provide this type of guidance to caregivers all the time.  It is still difficult for me to follow this advice because it is so engrained in me professionally/intellectually but I'm trying!

From the Stand Up To Cancer blog

Caring for Yourself: Advice for Cancer Caregivers

Posted on July 12, 2013, 6:30 AM

By Paul H. Brenner, M.D., Ph.D.

There are few harder tasks than being a caregiver for a loved one going through the journey of cancer. Caregivers are patient advocates. They take notes during office visits, remind those they love to ask specific questions about symptoms they are experiencing, and prepare their own lists of questions for both physicians and nurses.

As a family member or friend taking on a new role, caregiving can take individuals completely out of themselves, their routine, and their life in unconditional service to another. Since patient care can be overwhelming, it is essential for the caregivers to take care of themselves, set goals, exercise, and most importantly, be honest about their feelings of helplessness, frustration, exhaustion and often anger.

There are many potential sources of negative feelings for caregivers. Seeing a loved one suffer a serious disease is painful for everyone, and can be exacerbated by worries about finances and the future. Additionally, the individuals who have cancer tend to feel disempowered by those who are dedicated to helping them. So, ironically what you perceive as a loving act can be interpreted by the patient as disempowerment. In my experience as a psychosocial oncologist, the anger that most caregivers feel is directed toward medicine for its failure to alleviate the pain and suffering of their loved ones. The caregivers often find themselves desperately glued to the Internet researching the latest treatments, procedures, and natural therapies, getting overwhelmed by it all. 

It’s important to find healthy ways of taking care of yourself as a caregiver. Start by acknowledging, rather than denying, your feelings. You don’t have to pretend to be cheerful, even when you are feeling overwhelmed. It’s okay to cry. Don’t be afraid of making mistakes. And don’t expect to be perfect – no one is.

There are simple things you can do to make your life easier. Much of the caregiver’s frustration can be resolved by staying away from the Internet, which is filled with anecdotal tails of cures and complications. Medicine is not a pure science and cannot, as a result, offer absolutes solutions for all problems. But today’s medicine is the best we have presently, and is closer to cancer cures then ever before.

Rather than trying to tackle everything, focus on tasks you can control. It could be scheduling doctor visits, helping with meals and errands, and so on. Don’t be afraid to ask for help. Many of us feel that we need to “do it all.” Ask friends and family to help with chores, appointments, and so on. You may need assistance with the emotional challenges of caregiving, too. Try talking with your inner circle of support: loved ones, faith groups, or social circles. Or go beyond your inner circle to join a caregiver support group, or speak with a counselor, social worker, psychologist or other mental health professional. Each of these people may be able to help you talk about things that you don’t feel you can talk about with your loved ones.

So dear caregiver, be kind to yourself and treat yourself as lovingly as those you love. Find time and space for yourself. This allows the person who is ill to feel better and less guilty for consuming your life and for the suffering they feel they have caused you. To paraphrase the Serenity Prayer, change those things in life that you can, and have the wisdom to accept those things you cannot. Caregiving is a love beyond love that has no beginning or end, so cherish yourself with the identical love that your have for your beloved.

Paul Brenner M.D., PhD. was a gynecological oncologist who practiced obstetrics and gynecology, and also holds a Doctorate in Counseling Psychology. His journey through the healing arts has been in search of those unseen processes that play into chronic illness. He presently is the Psychosocial Oncologist at the UCSD Health Systems San Diego Cancer Center. Also, he is a Research Fellow at The San Diego Cancer Research Institute. He is involved in studying the impact of Trans-Generational Emotional Patterns on Health and Illness. He is the author of “Seeing your Life Through New Eyes” and “Buddha in the Waiting Room.”  He also has lectured throughout the world.

1 in 8

For someone who was recently diagnosed with breast cancer, I feel surprisingly Ok. I don't just mean physically but mentally/emotionally as well. Many people are a bit taken aback or look skeptical - but I really am doing ok.

I think that working in a cancer program (albeit pediatric and I work in finance) has helped. The knowledge I've gained working in this environment has provided a sort of comfort. I know what things mean, I know what to expect. But I also think that I am relieved that it is me.

1 in 8 woman will be diagnosed with breast cancer in their lifetime. That seems like a lot...

There are 7 women in my book club - so it's me. There are 9 women in my immediate family - so it's me. I am grateful that its not them. Why?  Because I know how to deal with me. I know what I need to do, I have some semblance of control over me, I don't worry about me - but I do worry about everyone else.

Or maybe I'm just foolin' myself!

H gearing up to beat this thing

Wrong character but she keeps saying "I pity the fool..."

As Tom Petty says:

The waiting is the hardest part.  Well...at least at this point.  Heather asked me last night how I was doing.  I said that I am eager for the 24th to get here but before we know it the 24th will be here and it will have arrived too quickly.  Heather acknowledged that statement and then said that she is not really putting a lot of significance on that date.

I applaud her for that but I am having difficulty reconciling that.  

I worry about being prepared...both of us.....for the surgery, the physical after effects, and the rebuilding and recovery process.

When I say the physical after effects I mean the impending painfulness not that fact that she will no longer have her own breasts.  I think she is pretty good with that and I am totally on board as well. She has always been and will always be beautiful.

I worry about getting the test results on the lymph nodes they will remove during the mastectomy.  If there is even an inkling that the cancer has spread Heather will need to go through chemo and I don't want that for her.

I tend to care more about others than I do myself at times like these and right now I am experiencing anticipatory stress about my wife's health and well being.  Not that there is anything I can do about it until the 24th but I am having trouble not anticipating it all.

I am so happy that we will celebrate Heather's birthday tomorrow and that we get to go to Bunbury next weekend together as planned.  I am being very selfish here but  I am happy that the double mastectomy and possible chemo will allow me the opportunity to celebrate many more birthdays with my beautiful bride.  I love her and want to spend as much time together as possible considering the fact that we got a late start together.  :)

Always keeping you abreast of my thoughts; Mark