Back in My Shell

A brief health update; I survived my two and a half weeks inpatient stay for my stem cell transplant at Brigham and Women’s Hospital.  No major side effects besides loss of hair, vomiting and muscle atrophy.  Now almost two months out of the hospital I am doing very well.  I am unemployed, but since I am not collecting unemployment and increasing the nation’s official unemployment rate, I do not believe my employment status will negatively impact President Obama’s chances of reelection.  Still no hair, but my strength and stamina have returned and I am busy in my routine of shuttling kids to activities, cooking meals, exercising and cleaning the bathrooms (have to earn my keep somehow). 

A few people have questioned me about my dearth of new blog entries.  Most notably my massage therapist Maryann at Orthomed Massage in Northborough MA.  Orthomed Massage is by far the best place for a therapeutic message in New England, I highly recommend Maryann if you ever decide to run a marathon when you are 40 years old or just pull a muscle lifting that heavy box with your back not your legs.  (I promised Maryann a gratuitous shout out if I ever posted a new blog entry).

I am a private person; there are very few people I will talk to about myself and how I am truly feeling.  I like being in my shell not sharing how I feel with most people.  In my profession as a mental health/substance abuse therapist my job is to get other people to talk about themselves while hardly sharing anything about myself. This suits me perfectly.  When I began cancer treatment I had to start sharing personal information with my clients and coworkers about my health due to my loss of hair and my absences from work.  I found it incredibly uncomfortable to have to talk about myself to clients and found myself in a great deal of discomfort when people would inquire about my health and how I was doing.  For the most part, smiling and saying I was doing fine was enough.

For some strange reason this self described private person felt the need to start a blog after I was diagnosed with cancer.  While writing this blog I have shared in a very public manner how I am feeling and how I am coping with the changes that have occurred in my life because of my cancer diagnosis.  I have enjoyed the writing process, but the actual sharing of my blog entries has made me uncomfortable.  After writing and posting many of my blog entries I would later read them over and feel anxious that I just shared personal information with the world.  I was torn between discomfort about posting blogs while at the same time checking the number of site visits at my blog home page to see if anyone was actually reading my blog  

When I was diagnosed with cancer and was feeling depressed many people encouraged me to attend therapy.  Being the good therapist that I am, I refused to see a therapist.  How was talking to someone going to help me? (I recognize the staggering the irony of this last sentence).  I think sharing my thoughts and feelings with the world, at least the very thin slice of the world that read my blog entries, was my way of engaging in therapy.

I am feeling better now; I still have treatment ahead of me, but for the time being I think I am through the worst of it. I have decided to stop mental health therapy through blog entries (based on the few entries I have posted over the past six months I made this decision a while ago, but now I am ending the pretense that I am a "blogger"). I am riding my bike, lifting weights, walking a lot and plan to hike up Mount Washington while on vacation in New Hampshire next week.  I have also begun writing in a journal daily, started taking yoga classes and and trying to meditate daily (or at least every few days) for the first time.  I think these activities will be my therapy for the time being.  I also can’t overstate the therapeutic value of  cooking a good meal and the value of a clean bathroom either.   

There is one last thing I need to share.  I need to let everyone know how much I love, and how important my wife Elyse is to me.  I would not have made it through the last ten months of diagnosis and treatment without her support and kindness.  Elyse is truly my better half.  She has all of the patience that I lack and she cares more about my health and taking care of my health than I have at times.  She has put up with all my crazy mood swings, some from the cancer treatment, and some from me just being me.  I am grateful that such a wonderful, caring and level headed person could find it in her heart to put up with me and love me as much as she does.  I also hope that she doesn't mind that I spent the afternoon writing this blog entry instead of cleaning the bathrooms as I told her I would today.

Time to go back into my shell.

Thank you to everyone who has taken the time to read my blog posts and offered kind words of feedback on my writing and support during my treatment.

The Health Hazards of Guinea Pigs

 

A little known fact that I learned last week: guinea pigs are a potentially deadly health hazard! 

Some context:

I had a dog when I was a child and planned to have one when I was an adult.  However, my wife Elyse has never liked dogs and when we were contemplating getting married she gave me a choice, I could have a dog or I could marry her.  After an extended period of contemplation (one year to be exact) I made one of the better decisions in my life and decided to forgo a dog and marry Elyse.

Though happily married I still wanted a dog--a golden retriever to be exact.  Unbeknownst to us the desire to own a dog is genetic since our two daughters both want a dog as well.  They have spent the last 14 years pestering my wife to get a dog (I might have chimed in a few times and pestered her to change her mind as well).  Elyse remained firm in her convictions and stated that we would never have a pet that could leave its cage or that would stink up the house, which explains the aquarium in the living room.  But still we pestered on and Elyse remained resolute in her resolve.

But then I was diagnosed with cancer.  I have read that cancer changes your life.  I have remained the same dopey person that I was before my diagnosis, but something changed in Elyse.  There was a crack in her resolve, a crumbling in her convictions.  Two months ago out of nowhere Elyse announced that we should buy the girls a pet.  No dog, but perhaps something smaller, a hamster or a rabbit, maybe?  Where this change came from is still unknown, perhaps in her mind pets would be transitional objects for the girls if I die from cancer (she denies this but I like the way it sounds so I chose to believe this reason).

After some investigating we settled on guinea pigs (they are diurnal and damned cute) and brothers Jasper and Charlie moved into our home.  At first they were to be banished to Hannah’s room, but it was decided that since they were family members they should be with their family so their cage has found a permanent home in our living room.  Charlie and Jasper have settled in and become regular if somewhat noisy members of our family.

Since December I have completed 5 rounds of chemotherapy.  I have escaped somewhat unscathed except for a 3 week long episode of the flu in February and two weeks of pneumonia in late March.  On the whole the chemotherapy has not been that difficult to tolerate, except when the steroids made me so irritable that my wife almost left me, but after the steroid dose was lowered my marriage was saved.

The next step will be a stem cell transplant beginning next week.  I will spend two weeks generating lots of healthy stem cells that will be removed from my blood and frozen.  On May 5^th I will enter a sterile room at Brigham and Women’s Hospital for 3 weeks.  My immune system will be knocked out with chemotherapy and then rebooted with my frozen healthy stem cells.  During and after this whole process my immune system will be very weak, which leads us back to the hazardous guinea pigs.

Last week I met with Muriel Gannon, a nurse at Dana Farber who oversees the stem cell transplant process.  During the course of our meeting she asked about pets in our home.  I informed her of the cute new guinea pigs who recently moved in.  Muriel frowned; guinea pigs are not good when you have a compromised immune system as I will for 2-3 months after I come home from the hospital.  Guinea pigs spend their time in their cage eating and pooping.  As Muriel described it, the guinea pigs running around their cage causes their feces to become air borne which we then breathe in.  Breathing in guinea pig poop can be hazardous to your health when you have a compromised immune system.  (Think about this the next time you come to visit us and breathe in our air full of guinea pig poop.)

What an ignominious way to die, death from guinea pig poop.

The solution to this problem is to move the guinea pigs to the basement and then I have to avoid the basement for a few months.  My daughters are not happy about this.  According to them, Jasper and Charlie will be cold and lonely in the dark unheated basement.  Given the choice between their father’s health and their guinea pigs they would choose the guinea pigs in a heart beat.

Ironically, according to Muriel the stem cell nurse, although guinea pigs are a potential health hazard, a dog would be fine pet after my stem cell transplant since they do all of their pooping outside.

How did I get Lost?

I have not posted to my blog recently because I feel like I have been lost for the last few months.  First I lost my brain and the capacity to use it effectively from radiation and for the past few weeks I have been lost in a sea of irritability and depression. 

I completed my radiation treatment at the end of November right after Thanksgiving.  I am convinced that my brain has not been working as well since I received the full dose of radiation as it was before beginning treatment.  I find that words and names do not come to me when I need them, my spelling has become atrocious (thank goodness for spell check) and for a while I could not compose a coherent sentence.

 I have a hard time remembering names of people and in a couple of times I forgot that I knew two different people because I did not recognize them when I saw them.  I had an argument at work with two coworkers and after 5 minutes of strongly defending my viewpoint I realized I was wrong when it was pointed out to me a simple fact that I should have remembered which completely undercut my argument.

I have sat down to write in my journal and in this blog before but I quickly became frustrated with my inability to form sentences that made sense and that linked together.

I began my chemotherapy 3 weeks ago.  For the first two weeks of the three week cycle I go to Dana Farber for my infusions two days a week.  The third week I have off.  In addition on the days I go in for infusions I have to take high doses of steroids. 

Taking the steroids plus the drugs they are giving me seems to be messing with my emotions.  For two and al half weeks all I want to do is climb under a rock and avoid the world.  I pick fights with my wife, have no patience for my children and don’t return phone calls or e-mails from family or friends who try to contact me.  I am just a joy to be around. 

For the past three days I have emotionally felt close to my normal self.  Unfortunately for everyone around me I start up with my chemo again this Monday, 

Looking over this blog post I have just written, I think I am still lost, no great insights about life and living with cancer, just irritability and self pity. Thanks for reading.

Bye, Bye Beard, Hello Fat Head

This morning I said good bye to my beard which I have had since I was 19 years old.  The radiation has caused me to start losing hair in various parts of my head, including a large spot on the side of my head and a large patch on the side of my beard.  This missing spot made the whole beard look ridiculous, when various members of my family voted down a goatee, it was time for all of my facial hair to go.

On a whim I have shaved my beard off for a day or two in the past, but usually allowed my beard to grow back right away.  Once when I was younger I contemplated shaving my beard and Elyse said "I have only known you with a beard, what if I don't like you without a beard?" It is not always reassuring to find out that your relationship with your wife is based on your facial hair.  I am pleased to announce that Elyse saw me this morning with clean shaven face and while she laughed did not immediately ask me for a divorce.  My family has also been enjoying making fun of how fat my head looks since the steroids and radiation have made my face swell up.

I was wondering if I would have some profound thoughts about losing my hair and its meaning to my illness.  Instead all I can contemplate is how silly I look without a beard and a big patch of hair missing from the side of my head. I am also spending way too much time worrying if I will look silly wearing a baseball cap with my new suit to Elyse's fancy work holiday  party.  So much for enlightenment.



White Blankets and Thoughts on Dying

Most of the patients in the radiation waiting room are fairly functional, they seem alert, and are actively engaged in conversations or arguments with family or friends who accompany them to treatment.  Some patients spend a great deal of time expressing irritation and annoyance about the wait for their radiation or their displeasure with the way their treatment is being scheduled for or provided by their doctor.  The rest of the patients sit quietly reading, or watching CNN on the TV in the corner of the waiting room.

However there is usually one patient in a wheelchair with a white blanket wrapped around them or the blanket is clutched in their hands as a security blanket.  These are plain hospital issued blankets that look neither soft nor comforting, but these patients hold on to them tightly. 

When you look into the faces of the patients with the white blankets, they have a blank expressionless look on their face. There is no light in their eyes, you can't make eye contact with them or engage them in conversation.  Their heads are sometimes bent to the side and they do not seem to be staring outside their bodies.  When someone approaches the white blanket patients and asks them questions, they do not or can not answer.  If after a fair amount of prodding by the hospital staff they do respond, they usually answer the questions asked in only one or two words. 

The white blanket patients have an ageless quality. Their faces are so blank that they don't have wrinkles, but they do not look young.  They just seem to be floating through time and space. There do not seem to be any family members accompanying the white blanket patients; they are wheeled out of the waiting room by drivers for nursing homes or staff with uniforms from ambulance companies.

In my imagination, the white blanket patients have already left this world and all that is left is the cancer filled shell of their body brought to the radiation department for more treatment.  I wonder why the white blanket patients are still being given treatment. 
I do not know this person; I do not know how hard the white blanket patient is still fighting to live.  Perhaps they are clutching on to life as tightly as they clutch on to the white blanket they are covered with.  The blanket like their lives might not be comfortable anymore, but holding onto that blanket might be better than letting go.

Before being diagnosed with cancer I had a hard time wrapping my mind around the reality that at some point I would die.  I knew on a rational level that at some point my existence would end and consciousness would cease, but some part of me could never fully comprehend or accept that reality.  Part of my mind would try to convince me that somehow I was different, that I would survive, that who I was as a person would never be truly extinguished.  I would have panic attacks thinking about dying and somehow distract myself so I truly never had to fully face or confront my impossible to avoid demise. Somehow I could avoid the unexpected illnesses, the brain aneurysm, the strokes or sudden heart attacks that seem to strike other people.  I know it was irrational, but I just didn't think I would die.

With the diagnosis of cancer the reality of the finite existence of life has come home to roost.  With a diagnosis of cancer you can no longer convince yourself that you are different, that you will come out of this life without dying.  You have cancer; to have cancer means to have an illness that while it might go into remission will at some point in the future most probably end your life. (Unless an earthquake, random blizzard or traffic accident driving on the Mass Pike to get radiation treatment at Dana-Farber ends your life first.).

I do not have a belief in god or a higher power.  I do not believe in an afterlife, I have no belief in anything after death but the end of existence, still I don't know where it went, but for the time being the terror has gone.  

Perhaps being forced to face for the first time that I am human, I have cancer, I am breakable has made me also accept the fact that I will die.  Perhaps it is sitting in the radiation waiting room seeing the white blanket patients who are in wheelchairs not moving, staring off into space, waiting for their next treatment when they seem like they have already left their body.  Maybe it is the realization that there are perhaps much worse fates in life worse than death. Maybe at forty three years old it is finally time for me to grow up.

Anasthesia Children

Monday through Friday I drive to Boston for my 2:15 appointment for radiation. When I arrive in the bowels of Brigham and Women's hospital at lower level 2, I run my card with a bar code through the scanner to let the radiologist know I have arrived for my treatment.  Next I check a computer screen that shows if the radiation dispensing machine is running on time or has a delay.  Most times the display reports that that there is a 30 to 45 minute delay and that I will be spending some quality time in the radiation waiting room. 

As I have mentioned in previous posts, patience is not a strong skill of mine.  In addition the radiation waiting room is small, tends to be crowded and is usually full of family drama and conflict from other anxious patients and their anxious family members.  Ironically learning what causes the delays in the radiation machine appointments has gone a long way towards helping me learn to be more patient during the past two weeks of treatment. 

The reason for the delays in the radiation machines is that clients with appointments have their appointments delayed by children under three years old who need radiation treatment.   The radiation machine staff explained to me that if a child is under three they need to be anesthetized before they can be put on the radiation table for fear that they will move and that the radiation will be delivered to the wrong area of the body. The anesthesia is administered in a different location in the hospital, so the radiation staff is left to adapt to the schedules of the anaesthesiologists and when they are able to get to anaesthetise the child. The anaesthesiologists are not concerned that I had a 2:15 appointment scheduled that day.

You can tell when the anaesthesia children are coming through because a hospital bed pushed by a hospital staffer rushes through the waiting area.  You get a glimpse of a small bald headed child lying in a large hospital bed.with a mask over their face. There is usually a worried looking parent following the hospital bed  who accompanies the child to the radiation room.

Seeing these children go by, I can't help but think of my two daughters and the scare we had with Hannah and her headaches  two years ago.  We took Hannah to Children's Hospital because she kept having daily headaches.  Luckily the neurologists did not find anything wrong with her and told us the headaches were caused by stress.  We later learned by changing her eating habits that the headaches were caused by an allergy to gluten.  But what if it had been something as unthinkable as a brain tumor causing her headaches?  If it had been a tumor causing her headaches, Hannah would probably have used the same radiation machine I am since this machine specializes in administering radiation to the head.

When I arrive at the radiation waiting room tomorrow I will still be disappointed if the machine has a long wait, knowing I'll get stuck in traffic on the way home.  But I will not be annoyed, irritated or be impatient, because I know that my children are healthy and are happy at home doing their homework, watching TV, playing on the computer or outside enjoying the Fall weather with their friends.  And I know that somewhere in this hospital a small child is being administered anaesthesia because it is time for them to have radiation treatment that they are way to young to have to be going through.

Gratitude - It Takes a Village

Over the past two months since being diagnosed with cancer I have truly been amazed and grateful for the outpouring of support and kindness from family and friends.   I have received cards and letters from people I was close to and others I was not so close with.    I have received calls from people who I have not heard from in a while who have heard of my cancer, and are concerned about how I am doing.  I have heard of other people who want to call but don't want to overstep their bounds and have held off until I feel comfortable calling them.  I have heard of blessings being given for my health, novenas recited and candles being lit.

Elyse and I have received offers of help with transportation to appointments.  Open invitations to have my children come over for play dates whenever we need help and offers of meals and support to help us through any times when treatment gets tough.  Coworkers come to my office everyday to check on me to see how I am doing.  The theme of every conversation, letter and phone call has always been that we are concerned about your health, we hope you get better and let us know if there is anything we can do to help.

As a clinical social worker I have spent my career helping my client's identify and utilize support networks to help them cope with their health and mental health issues. As a social worker I have come to truly understand how interconnected we all are.  How we need each other to support each other and love and care for each other to get through the tough times.  In my clinical practice I have clients who I see get stuck focused on thinking that they are the only ones who can take care of themselves.  They end up isolated and lonely and have few support systems to help them through the tough times.

Ironically it is only in the past year that I have begun to truly realize how important connections and community are to my life.  I have to confess that from time to time I still think of the the old Simon and Garfunkel song about individuals being an island that does not have to rely on other people.  For longer than I would like to admit I believed that was true.  Even after having a family of my own I some how believed that Elyse and I could take care of our family without extra support from family, friends and community.  It did not matter if we lived a few hundred miles from our nearest family.  We were a rock, we were an island, we could take care of ourselves. 

Over the years as our children have grown and our family has confronted various crises and issues I finally have begun to realize how important it is to be personally part of a community that supports and cares about our family and a community that gives us a sense of belonging to something more than just the four of us.  When Elyse and I contemplated having Alexis' bat mitzvah in a synagogue where we had no sense of community we felt empty and alone.  Luckily we were able to find Beth El, which provided a compassionate, supportive community to help us celebrate Alexis' bat mitzvah. 

My diagnosis of cancer and the subsequent outpouring of kindness and caring have truly convinced me of what I should have known all along.  That you can't go through this life alone.  Connections need to be made with others, these connections, these moments spent with others are to me what give our life meaning.  Supporting each other, loving and caring for each other, what else can possibly matter more in life? 
The realization that I am part of a community that cares for and loves me and my family is for me the silver lining in this cancer cloud.  I wish that I had been smart enough to have seen the love and care that has always been there for my family without having to have the wake up call of cancer make me finally open my eyes.

I have not always been diligent about returning phone calls and responding to cards and e-mails.  Please know that I truly appreciate every kind and supportive word that I have been the recipient of since my cancer diagnosis.  Knowing that I am not alone in this, that my family is not alone in this is what makes this experience bearable.  Thank you.