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.

Emotional Roller Coaster

Though I probably should know better by now, I am continuously surprised by how much of an emotional roller coaster having cancer can be.  Yesterday my mother and I went to Brigham and Women's Hospital to begin the official radiation treatment.  I had been anxious all morning about finally starting treatment, in fact one of my coworkers said I seemed a little manic.  Possibly, but I felt okay and in control.  I was alright.  I was going to finally begin treatment.

We drive into Boston, no traffic, easy parking and we check in on time.  The radiation machine is running 15 minutes late but no problem, I have my computer, free coffee in the waiting room and bowls of unhealthy snacks everywhere.  This is going to be fine.  I can handle this.

A few minutes later the staff bring you into the area where the radiation machine is. My mother asks if she can come in to see what they are doing, of course we would be happy to have her come in.   They show you their control room where they will be running the radiation machine.  They politely introduce you to everyone who is on "your team" and will be overseeing your treatment for the next 25 visits.

Then you are brought down a ramp into a large room where there is a bed laid out with this large machine that dispenses the radiation filling up the room.  Turns out that today will be the final fitting for the mask and adjustment for how the radiation will be administered.  They will take some xrays to make sure everything is in alignment, the radiation treatment itself will actually start on Monday.  No problem.

Then everything starts to change.  They put me on the table, they put the mask over my face and lock the mask and my head down in place on the table.  I suddenly start to feel claustrophobic, The mask is tight and my face starts to hurt, I don't know whether to have my eyes open or closed and all of a sudden the table starts moving, gears are turning, things are moving around me. 

Suddenly I am not so alright. This all becomes too real.  I am lying with my head pinned to a table in a plastic a mask with my head needing to be filled up with radiation because there is a damn tumor in my head that shouldn't be there.  Suddenly I want to be anywhere else in the world but tied down to this table, in this room, in the lowest floor of this hospital in Boston. 

Then it ends.  They release the mask, I get up, I am handed a schedule of my next 25 visits for the radiation treatment and told to be back on Monday.

My mother and I don't say much, the valet delivers the car and a few minutes later we are on the road back to Acton.  I'm alright, I can handle this. 

But maybe I can't, because a few minutes later I am driving in traffic on Route 9 and I can't stop crying. 

My mother says "we will get through this". We will, I will, what other choice do I have?   But I suspect that we will be riding this roller coaster for some time to come.

Maximum Radiation

Today I had my first follow up visit with Dr. Munshi my oncologist at Dana Farber.  We discussed the radiation treatment I will begin tomorrow for the tumor in my head and talked about the long term course of treatment for my Multiple Myeloma.  Along the way I learned some interesting facts about radiation and the human body.

The different parts of our body retain memories of the wounds we inflict on them.  In particular any given part of our body can never be exposed to more than 5,000 rads of radiation in a lifetime before something really bad happens (I'm not sure what this bad thing is and I am not sure I want to know).  What this means is that we are limited by our bodies to how much radiation treatment we can receive for cancer in any one location.   

Apparently there has been some back and forth discussion between Dr. Munshi and Dr. Ng, my radiation oncologist, about how much radiation to dose me with during this phase of treatment.  As has been mentioned many times by many doctors, I have an impressively massive tumor taking up space in my head. Dr. Munshi was inclined to go for a lower dose of radiation and save some extra rads to use later if the tumor returns.

Apparently Dr. Ng is a bit of a gambler.  Her thinking is that since the tumor is so massive that we go for broke and use up the allotment of radiation my skull can take in one course of radiation and knock the tumor out of my head for good.  Dr. Ng believes that any rads that we might conserve for use if the tumor in my head returns in the future would not be enough to make a dent in treating a recurring tumor.  So the decision has been made to go for maximum radiation and knock the tumor out of my head. 

I am not a gambler by nature.  I tend to hedge my bets and make back up plans for my back up plans.  So what am I to make of Dr. Ng's gamble on going for broke with the most rads at once?

I have been told many times that as a good patient I should be advocating for myself and making sure that I agree with the medical decisions being made for me.  At what point does the science become so overwhelming and above my level of education that I can't begin to possibly have an opinion about the exact course of treatment being proposed. 

I think I can make the big decisions about where I want to receive treatment based on how the doctors present to me, but when it comes to deciding whether to save some rads for later or go for maximum radiation I have no voice in the discussion.  I think I am okay with not being a part of this discussion.  I am not an expert, but maybe I am smart enough to pick the right experts to treat me and then let them decide what treatment will be the right one to get me back to good health.  If nothing else we can save money on batteries in case of a power outage in a storm this winter since by the time I am done with this treatment my head will probably be glowing in the dark.

Flight Delayed

I do not like flying very much and I have always hated flight delays. I am usually very careful about getting to the airport on time (perhaps too early Elyse might say). I make a plan to anticipate possible traffic problems, delays with lines at baggage check in and long lines at security all with the goal of having a comfortable cushion of time get to the gate and board the plane with plenty of time to spare.

My plan has never failed me, I have never missed a flight. However I have forced my family to endure endless hours of boredom in airports as they arrive early for a flight that can be delayed for many hours. This is when I am at my worst. I can't focus on my book, I pace the airport concourses, checking the departure boards obsessively to be on top of any further delays in the flight. I even spend large amounts of time staring out at the runway trying to anticipate if the plane currently landing is the one that will soon arrive at our gate to carry us to our destination.

All the while in the back of my mind I am thinking of how ridiculous the whole concept of flying is and worrying about how much I hate flying. Large aluminum tubes full of people should not be able to stay up in the air without falling back to earth. Logically I understand the principles of aerodynamics, lift and air flow speeds, but the anxious worrying part of me does not believe in the reality of physics and still anticipates the the large aluminum tube with wings will fall out of the sky.

For my cancer treatment I have chosen my airline, I have decided to receive treatment at Dana Farber. I have bought my ticket by agreeing to have radiation first and then chemotherapy and a bone marrow transplant after the radiation is completed. I have met the captains of my flight my oncologist and radiation oncologist.

I met with the radiation oncologist last Thursday and was told the plan of 20-25 sessions of radiation using a fancy technique called IMRT that would hopefully limit the negative impact of the radiation on my eye sight, various glands in my head and my brain itself. I took another MRI and was fitted for a mask that will be used to guide the radiation to the exact spot where it will be most effective. I am ready to start my trip.

There is delay in the flight. Since they are using IMRT to give me the radiation it takes 10 days to map out the course of radiation based on my recent MRI. I will not begin radiation treatment until October 24. I am anxious, I am pacing and worrying, I want this treatment to start, to begin to get the cancer out of me. But part of me is worried about how my body will react to the treatment and what the potential side effects from the treatment will be. I worry about whether the treatment will even work. Part of me wants to leave the airport, cancel the flight and pretend the cancer does not exist so I won't have to go through with treatment.

I am a worrier by nature. I dislike unanticipated problems that can come up in my best laid plans so I make plans to make plans for all the things that can possibly go wrong in life. My theory has been that if you plan enough you can anticipate and prevent any problems that would prevent my original plan or goal from being reached. I have cancer, I can't plan for this, I can't control for this. I am at the airport pacing and worrying because my flight is delayed, but also terrified about having to take this flight.

Why Me?

Image of Multiple Myeloma Cancer Cells

The question that I have been struggling with since my diagnosis with cancer is, why me?  Why did I contract this illness?  I am in decent physical condition,  I don't smoke, drink alcohol or take any recreational drugs.  Except for an excessive fondness for sugar and white flour I have led a generally healthy life.

There is a history of cancer in my family but the cancer I have been diagnosed with is not related at all to they types of cancer other members of my family have contracted.  In fact statistically I am too young to have contracted this form of cancer.  The median age for diagnosis of Multiple Myeloma is  in the mid 60's and is rarely seen in anyone under 50 (I'm 42).

So I ask the question, why me?  My mother's response is "why not you?"  I think her question is much more valid than mine and is the answer I have been looking for.

Recently I have been reflecting on my life and thinking about all the good things that have happened in my life, I was raised by loving parents who always took care of me, I had no major health problems or disabilities, I grew up in an affluent community where I was provided a good education and the access to the tools I needed to have a professional career.  I have a wife who loves me and two children who while annoying at times are turning into wonderful people who I am very proud of.  I have a very good life, but I never spent much time thinking about why me, why have I been blessed with such good fortune?

Malcolm Gladwell in the conclusion of his book Outliers summarizes that much of success in life is a confluence of random choices made by our ancestors and the people they interacted with.   These choices lead to a particular person being at the right place in time and space in history to achieve success in their chosen field whether it is art, business or science.

So if I never questioned the random choices made by my ancestors and the happenstance that led me to my good life, who am I to suddenly question when things change and I am confronted by a previously unimagined health problem.

Why me?  Why not me.

Dana Farber Day or Toto We're not in Kansas Anymore

We survived Dana Farber Day.  As we continue to ride the cancer emotional roller coaster, today was one of the better days we have had in a long time.  To start with Dana Farber itself is quite impressive, how can you go wrong with a hospital that has a baby grand piano in the main reception area as well as free coffee and water.  In addition they use the good elastic wraps after they draw your blood, not the tape or band aids that rip out all of your arm hairs when you try to pull of the band aid (they also let you chose which color wrap you want, I chose purple, I also think the gauze pads they use are just a little bit softer).

The attractive receptionists all smile at you and make you feel welcome, plus lets not forget the pretty young woman who walks around the waiting room with a cart of books and magazines for you to choose from and read while you wait. When I asked the receptionist whether the doctor was usually on time, she replied that the doctors at Dana Farber are always on time.

Of course the building itself is new and nice and they serve Starbucks coffee in the cafeteria, but the picture below of a sign that is in all the waiting rooms explains the real reason why I am transferring my care to Dana Farber.... 

....really they let you borrow iPads while you sit in the waiting room.  Attractive receptionists, good band aids, Starbucks coffee, free use of iPads how can you say no to that?

I suppose there is also the matter of the treatment you receive after you spend some quality time in the waiting room with the complimentary iPad.  For the first time in 3 weeks I feel a sense of hope.  For starters I would like to thank my parents for having my sister before they had me, allowing me to be born and diagnosed with MM a few years later than if I was the first born in our family.  According to my new oncologist Dr. Munshi, if I had been diagnosed with Multiple Myeloma 2-3 years ago I would have a much different prognosis than he was able to give me today.   

The new medications that have recently been introduced have changed MM from being viewed as a death sentence in a few years after diagnosis to being viewed as a chronic disease that needs to be monitored and addressed through treatment periodically after initial treatment is completed.  

The treatment itself is much less debilitating than it has been in the past thanks to the new cocktail of medications that they will be using.  I will first go through a course of radiation to address the tumor in my head and then a round of four chemo therapy treatments, that while they might tire me out a little will allow me to keep working.  Culminating with a bone marrow transplant that should still be a pain in the butt.  This is a much better prognosis for treatment than I received at UMass where I was told that the treatment would be so exhausting I would not be able to work for 4-6 months.  

A good day filled with hope for the first time in a long while, plus I have stopped planning my own funeral in my head.  Though I have to admit I was looking forward to all the nice things I planned to have Elyse say about me as part of the eulogy I was writing for her to read at the funeral.  Plus the song I was going to have the girls sing would have sounded quite lovely.

Me and my tumor

Above is a picture of the tumor that was found in my skull that was pushing out my right eye.  The tumor is the V shaped structure below the brain on the left side of the photo.

I have been told by various doctors that the tumor is "massive", "impressive" and "in 25 years I have never seen a tumor that big in that location".  I feel so proud, for the first time in my life I am an overachiever at something.

Since the original MRI found this tumor, additional tests have found three other sites in my bones where there are additional cancer lesions growing.  The lesions are located on different bones around my body.  It is good to be well rounded, I would not want my swollen head to get all of the doctor's attention.

The Beginning

Two months ago I was leading a fairly normal life when I made the mistake of going to the eye doctor to complain about the trouble I was having reading out of my right eye.  The eye doctor walked into the exam room, took one look at me and referred me to an opthamology specialist.  I had not noticed it but my right eye was popping out of my head.

That referral has set off a chain of events including meetings with numerous doctors, an MRI, multiple CAT scans, being injected with radioactive sugar water for a PET scan, a series of over 25 bone x-rays and an encounter with an ENT who I believe could teach the Marquis De Sade a few lessons.  Tehse events have led me to where I am today, on the eve of going to see a specialist at Dana Farber to get a second opinion on my diagnosis of Multiple Myeloma.

Multiple Myeloma is a form of cancer that I had never heard of a month ago that attacks the white blood cells in the bone marrow and in turn causes the bone to start crumbling and also produces tumors from the various sites where the bone has begun crumbling.  This is a link to the wikipedia page that gives an in depth description of Multiple Myeloma.  According to Wikipedia (which has been known to be wrong in the past) the actuarial tables give me a life span of 3-7 years.  I am aiming for a little longer than that.