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.

Thank You Mom and Dad

Today is my 43rd birthday.  To celebrate my birthday, instead of my usual self centered cancer reflection, I would like to to write about my parents.  I always knew I had great parents but my cancer diagnosis has reinforced their depth of love and devotion to their not always perfect son. 

From the very beginning of my diagnosis my parents have wanted to know what was going on with the process of diagnosis and treatment for cancer.  They were not looking to have the sugar coated version to protect themselves from any pain or anguish.  As my mother says "we don't keep secrets".  And they have taken in all the information about my diagnosis and prognosis without flinching.  They have accepted my diagnosis and decided that they will do whatever is in their power to help me and our family get through this experience intact.

They have been available on the phone to talk whenever I needed.  They have come to Acton numerous times for weeks at a time to make sure that I did not have to go to any doctor's appointments by myself.  They were there to support Elyse while she was waiting for me to get through my initial biopsy surgery and they have been supportive in every way possible since.

My parents have helped with every aspect of our lives from making delicious dinners, helping with household chores, and shuttling the girls to various lessons and doctor's appointments.  They never say we ask too much, they just ask what else they can do to help.  They put up with staying in our not so large home and graciously witnessed the sometimes outlandish behavior of adolescent girls.

My parents are always eager to talk with the girls, play a game with them, listen to their latest musical creation or bad joke or just watch the Colbert Report together in companionable silence.  Truly they are engaged grandparents of the highest order.

Elyse and I would never have been as successful with this transition in our lives without the help that they offer continue to offer us. 

Personally, the support and encouragement that have offered me have gone far in helping me to begin to mentally and emotionally accept my diagnosis of cancer and the beginning of treatment. I would not have wanted to attend my doctors appointments with various oncologists without them.  Their presence made hearing not so good news much more tolerable.

I am also grateful that they were able to accompany me to my first appointments as I began my radiation treatment this week and adjusted to the reality of  beginning cancer treatment.  Today was the first day that I have had to drive to Boston by myself for treatment.  All my other trips were taken with my Mom and Dad and particularly with my mother. 

I truly missed having my mother's easy companionship today.  I did not realize how much I have benefited from our hours long conversations as we sat in traffic.  No topic was off limits, we talked about what it means to have cancer, how to live with cancer and every other topic imaginable that two mental health therapists in a car would discuss.  My mother is incredibly generous in sharing her own experiences and feelings, and reflections about her bouts of cancer to help me cope with the emotional ups and downs that I am experiencing.

As I reflect over the past 43 years of my life I realize that I have not always been the best son.   I have said things to them in anger or irritability that I truly wish I had not said.  I did not call or visit as frequently as I should have.  Yet through it all my parents have loved me and believed in me and for that I could not be more grateful or thankful.

I think about who I am as a person on my 43rd birthday, I have flaws and problems, but I truly believe that whatever good there is in me comes from my parents and the love and devotion that they have shown to me all of my life.

Thank you for everything Mom and Dad I love you both so much.

Treatment Begins

It has been a month and a half since being diagnosed with cancer and much of that time has been spent  anticipating beginning my treatment to fighting this cancer.  On Monday I officially began treatment with my first session of radiation.  

As you can see by the picture above, when I enter the radiation room, I lay down on a stretcher  that has a fitted form for me to lie my head in.  Next the white mask that has been molded to the contours of my face is put over my head.  The mask is snapped into place and my head is locked down to the stretcher table.  This ensures that I do not move during the treatment and the radiation gets to the exact spot it is supposed to go.. 

After I lay down and my head is locked in place the stretcher slides into position under the machine and the technicians take two x-rays to make sure that I am positioned correctly.  Then the round dome you see in the picture moves around my head.  With a mechanical whirring noise the dome moves in a circle around my head.  Every foot or so, the dome stops and for a few seconds I hear a high pitch whining which I assume is the radiation being dispensed.  The dome than moves around to another position and whines again.  The dome seems to make a complete rotation around my head stopping six or seven times to dispense radiation. 

The whole process takes about fifteen minutes.  I don't feel anything while the radiation is being dispensed, but the nurse told me today that I might have some swelling  in my face and head for the first few days as my body adapts to the radiation.

Nothing profound or earth shaking to report, no great insights into the meaning of life and what it means to be receiving treatment for cancer. 

Just lie still, don't move and allow the radiation to fill up my head.

One radiation session down, 24 more to go.