What can I say?

One of the most frequent questions I was asked on my first day at camp was, “Is it anything like you expected?”  It was not ANYTHING like I expected.  I was familiar with the location and some of the regulars.  I have, in the past, done some research on the event and its participants.  I have even participated in many of their functions/events both in the city and in the woods.  It’s the “woods” part that surprised me the most from a personal standpoint but the human dynamic was almost life-changing. Here I was a “camping” with over 2000 alpha males and the only thing any of them had on their minds was making sure that everyone, around them was having a good time. There were captains of industry, politics and entertainment.  Many were internationally recognized celebrities getting away from “celebrity.” Many were musicians and artists gathering to relax and enjoy each other’s talents.  There were folks with more money than god, and there were working stiffs with attributes that the club felt would enhance their cultural growth and humanity.  Few spoke of anything but the camp experience.  Discussions focused on what was said at one of the 3 or 4 discussions, lectures or presentations made at various venues every day.  There was music around every corner. The food was exceptional.  The environment is indescribable. In short, most of what you hear and read about the Grove is fabrication.  It is a private club, it has a valid reputation of being elitist [what private club does not?] and it turned this nature-phobe into a tree-hugger for one wonderful weekend.   Oh yeah, they/we do still pee wherever as long as it is not visible from central facilities were women are employed.

And BTW my blood work today was excellant; I don't have to go in tomorrow, and I didn't gain any weight over the weekend.

Round Two II

After a fitful night of trying to keep my arm straight and getting up every other hour and trundling down the hall to the common bathroom to eliminate the 6lbs of liquid infused that day, I woke exhausted and hungry.  Pancakes looked good and the view was great.  I got to Oncology around 8AM and George came in 5 minutes later and lead us to the infusion salon.  I asked for and got the Benadryl infusion right away and dozed off to never-never-land.  By the time I woke up Judi was installing the Bendomustine [I slept right through the rituximab! I bought some dried fruit the night before and snacked knowing Caroline was coming at one with a treat.  I was through by one, two hours earlier than the day before.  Judi had upped the drip rate because I tolerated it so well the previous day.  I led Caroline through the corridors to the “canteen” and we went outside to the picnic area for a petit dejeuner sur l’herbe.  It was not really breakfast but I love the image.  It was a glorious day with a spectacular view and witty and eye-catching company.  Being sick certainly does have some great perks!  I bid farewell to Caroline and the VA and managed to just escape the afternoon rush hour.  I got home and went to bed. 

My next trip back will be for a scan; sometime next week I think.  I will then meet with Dr. Mannis on the 31^st to discuss the results.  I return for another round on the 14^th and 15^th or thereabouts.  Then another scan, another consult and again until they feel that the “bulky disease” is sufficiently reduced to consider a reduced regimen or suspension of treatment.

Round Two

I just finished round two.  After driving down at 5:30 AM and getting my lab work done I headed to Oncology fully expecting to wait at least a couple of hours to be called.  No sooner than they had taken my vitals in pops Nurse George who points at three of us and says “follow me.”  We are taken to a large room with 9 recliners and 9 machines that go “ping.”  I take a corner so I can access the view of Ocean Beach.  It must be just down the hall from my “room with a view.”  Nurse George works in tandem with Nurse Judi and they are quite a team.  They can hook up 9 patients in less than an hour and monitor them with such precision that they can turn a table [lounge chair] in an hour and call for the next diner. My prix fixe was along the line of a meal at the French Laundry.  Most of the diners were a la carte and spent 1, maybe 2 hours sampling the fare.  I was there for 8 hours.  Each delicacy was brought to table as the previous one was being finished.  For appetizers I was given [orally] two Tylenol and two anti-nausea pills.  My beverage was the “House” saline administered as a drip.  We had trouble finding a vein.  I think they have all gone into hiding.  Optimally they hoped to use a hand or wrist vein [in lieu of the easier to find elbow vein as the device was to remain attached to me over night and the elbow should not be bent once the insertion is made.  The main course was Rituximab [the house special] which was served alongside of the saline.  3 hours later after I had finished the Rituximab I was given the Bendomustine which was about a two-plus hour drip.  For desert I had about an hour of hydro-cortisone.  I was released at about 3:30.  Because I was keeping the tube in my arm I was staying in the Hop-tel, two small art deco buildings just past the parking lot.  They are all double rooms and must be shared.  Luckily I had an interesting Nam Vet who was there for major dental surgery.  He was quiet and unobtrusive.  I had dinner out on Clement and 22^nd at a charming little Italian restaurant called Mescalanza.  I came back to Fort Mylie and went to bed.

The Disappearing Neutrophils

Back home 5 hours after leaving… There will be no chemo today.  My lab results this morning indicate that I am neutropenic; I am suffering from a diminished supply of neutrophils. According to Wiki, neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).  My white blood cells are low.  I have been rescheduled for next week [the 17^th and 18^th].  In the meantime I have to be wary of bacterial infections.  I have to give up my volunteering at the day care centers, candy-striping at Children’s Hospital, and teaching at the pre-school.  There will be no hugging and kissing either.  I won’t wear a mask.  I draw the line at masks.  Unless it something from Mardi Gras or Carnival but they don’t serve the purpose anyway.  I met my new oncologist today.  Dr. Gabriel Mannis is a very nice young man and we will get along just fine.  He is, however, NOT Dr. Michelle Phillips. 

And!!! We could not find the cancerous lymph node in my neck.   Good riddance.

Love is the Drug

Just received a call from George, an ONC Nurse at the VA, who was tasked with making sure I knew what I was in for during the next two days.  I am to report to the Lab for blood work at 7AM so that it will be ready for the Doc by 9:30.  My appointment with my new Oncologist, Dr. Mannis is at 9:30 and the infusion begins at 10:00.  It lasts all day… “into the late afternoon.”  He has suggested I bring a lunch as I won’t be allowed to leave the outpatient ward while I’m hooked up.  A Big John’s sandwich sounds good to me.   I will spend the night at the “Hop-Tel” and repeat the procedure on Wednesday.  I will drive home [after a nice dinner] that evening.