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.