Dearest friends, family, neighbors, supporters and acquaintances,

It has been way too long since I have written, though it is on my mind often.  I will start with the most recent events and then back up for details.  Last Monday, November 10th, Gary had a CT scan.  The previous week he had a number of tests that they have to do within 30 days of a stem cell transplant.  Thursday was the appointment with his oncologist.  They left us waiting for a long time.  When his oncologist came in she was with Aliza Shapiro, the outpatient social worker who has been the only person I actually look forward to seeing in the hospital.  His oncologist pulled no punches.  She sat down and told Gary (she does not even look at me, let alone greet me in any way)  that she had very bad news.  We thought he was in remission, but this type of Non Hodgkins Lymphoma was very, very aggressive, and the tumor had tripled in size in the last few weeks.  They are going to put him back in the hospital on Tuesday for three days of a new chemo protocol.  In for three days, home for eleven.  I believe she said they would do three cycles of this.  Gary asked how long he would have if he didn’t take the chemo.  Her direct answer was either a couple or a few months. She left us with no grand illusions about the outcome.  And then, as if to cross the t and dot the i, she did something that told me more than any of her words could say.  She hugged me as she left the room.  We drove home from the hospital numb.

Gary is the most amazing man ever.  Each morning he rises, walks the dog, does his Buddhist chants, exercises the foot where he got dropfoot from the first intrathecal (spinal) injection of methotrexate, administered bedside by a physician’s assistant.  She hit a nerve.  Now he does all the exercises the Physical Therapists have given him, and it is getting better. He reads affirmations, listens to wellness tapes…everything to keep his spirits up.  Kindness and goodness, thy name is Gary Balogh.

In Gary’s sixth and final round of chemo, a pretty big medical error was made.  Two bags of chemo which should have run consecutively, were run concurrently.  They admitted their error, but Gary became quite ill from it.  He also, at the same time, got a bacterial infection from a peripheral blood draw.  A four day hospital visit turned into three weeks.  It was the first and only time Gary vomited during all of his treatment.  We contacted the ombudsman, but are not quite satisfied with how they did, or better put, did not handle the situation.

The next situation was the loss of confidence in our care, which set Gary into an almost catatonic mental state.  Everyone at home and at the hospital had noticed the difference.  We went to the hospital for blood, and they ended up admitting him for his mental state.  I will not elaborate on this, but with a team of psychiatrists and the right medications, the Gary we know and love was back quickly enough.  I, on the other hand, sank into a severe depressive episode.  I cried all day on many days, could not get out of bed, and had anxiety added to the list of my ills.  My family did a mini intervention.  My thanks to Stephanie for her help in getting me to enter an outpatient treatment program.  I am doing much better. 

The first attempt at harvesting Gary’s stem cells failed.  Part of me felt devastated, part of me glad to know that the thing I dreaded most would be put off for a while.

They Gave his body some time to recoup from the massive doses of chemo and the psychiatric state.  Next they told us he would be offered a compassionate trial.  The word “compassion”, in this case, stems from the fact that the patient is being allowed to use new, cutting-edge drug therapies without fitting into the clinical trial sample.  It simply refers to the fact that they are allowing him access to the therapy even though he is not a participant in the study.  Although they collected the stem cells, any use of them at this point is at the very least put on hold.

I am not going to talk much about Elijah, because he values his privacy at this age.  But my heart breaks for him.  At least he and his Dad are spending more time together than ever before, and for that I am grateful.

To my mother who withheld judgement when I am sure she had plenty she would have liked to have said, sometimes being an enabler is the right thing to do.  Thank you for your care for Elijah and all your help with driving Gary.  To Susan,  thanks for loving my husband and all that you did for him, from the driving to the little things like packing him lunch.  To Marlowe for your driving and Sandy for your blintzes.  To Bikur Cholim for the food…Sora you are amazing.  To Tebby and Jay and all my friends who are always there, and are probably sick of my tearfulness-I don’t know what I would do without you.  To our hero Priscilla, I wish I could think up a new adjective just for you, because none of the existing ones seem to be quite enough.

To my brother and Debbie, thank you for allowing Elijah to be a guest in your home for a month.  A very special month, indeed.

To my Dad and Ellen for allowing us the luxury of not having to worry about health insurance…I am appreciative every single day.

To my neighbors Kim and Phil, Brian and Julie, for helping with Eden, and for giving Elijah a soft place to fall.

Please continue to pray and to have hope.  Don’t forget about us.  To those we know an to the strangers who occasionally send a check, we are forever grateful.  I know I will love life again some day, but give me time. One small footstep at a time.  I may have forgotten somebody here, I promise if I have forgotten to thank anybody, that it may not have come out on screen, but I assure you that you are in my heart.

xxxooo

Jo-Ellen