A
week of our Clinical Trial.
UCSF
Helen Diller Family, Comprehensive Cancer Center, Mission Bay.
Three full days we have spent in the city.
Three full days we have spent in the city.
I
can honestly say I have never spent so much time on the road driving in and out
of the city. And, of course, my driving is not quite as good as Johnny's.
Not a time to have a driving argument. Once upon a time
heading into the city was for fun. Now it’s a need, a necessity and
requirement.
We
cannot "fib" to you, it has been strenuous, since no chemo in May.
Johnny's weight has deteriorated significantly, I have lost count of the
amount of butter, eggs full fat milk, cream added to his food. Weight gain is
significant. It's important. The body requires fuel to fight.
Johnny's loss of appetite, requires me to become more creative with meals. Tiny morsels at
time it can take 40 minutes to eat a meal and then to not complete his
plate. With profuse apologies he
pushes it away. Its OK – eat what
can love. There is nothing he
desires to eat. The pain continues, to beat him down. The
narcotics, help relieve the pain, he has to take far too many, which in this
case, leaves him befuddled with speech, slurry of words, enunciation,
and absent mindedness. Over medication comes to mind, to which the
doctor lowered the dosage, having never met a patient on such a
high dosage. Johnny slowly moves, shambles around the house,
holding his stomach, with a brave face. I wince, hard to see a
strong man, my man, my husband my soul-mate, punished, whipped down to his
weakest. It is as though he is being hounded by a masked
executioner. Johnny continues to amaze, he fights to live life.
He tells me he does not feel as though he has one foot in the grave,
just yet.
UCSF
Mission Bay, driving right through the city, chock-a-block with traffic,
all of 90 minutes, is challenging, to say the least. Time of day,
morning, does not help. But, UCSF, a new campus,
clean modern and slick is exhilarating, fascinating, new technology,
dynamics of the doctors and nurses, swift check in questions, strong questions
in need of the right answer to ensure Johnny is able to participate in the
trial. The desire to ensure Johnny is "comfortable".
Tuesday 23rd June: Week 1-Day 1 - Doctors Consult
Blood
work is drawn, three tablespoons of it, in order to evaluate his general
health. We meet Dr. Tom Weber, who gently prods Johnny with questions,
listening patiently taking notes. He took his time, no rushed
appointment, it was all about Johnny. Caring and understanding. One of the questions he asked "how
are you feeling, are you up and about or lying in bed"? to which I pipped in saying "are
you kidding he has put in two skylights, hardwood flooring, created a
front courtyard, paved, with double open doors, new roof, new bathroom and now
he wants to have new kitchen cabinets and change the granite, oh and yesterday
he is hanging the hammock and a washing line". Johnny proceeds
to get his iPad out and show the doctor photographs, whom is suitably
impressed. "Well what do you do when you are not creating a
home"?, "Oh I have a racetrack and race cars around the house".
Dr. Tom Weber says well in that case we are more than good to go,
with a nod to the nurse. I asked what did he mean? Well,
"The last patient I had to turn away as he did not qualify for a
clinical trial, he was not active enough, he was in bed all day".
So my friends, that have seen our Johnny of late, it is a good thing
Johnny is doing what he wants to, in order to keep his mind activated and
stimulated. Creating a beautiful home for me, the puppies and kitties.
Tuesday
23rd June: Week 1-Day 1
Cyclophosphamide. Chemotherapy,
a low dosage. It works together with the GVAX Pancreas Vaccine, along with a
nice bag of saline to hydrate Johnny. Side effects, fever, sweating,
we were up most of the night wiping him down changing the sheets.
Not much pain but still with some. As he sleeps before our next
appointment, (Wednesday), I checked in on him, curled up in a fetal position,
bundled up in the white fluffy duvet, puppies buried within, wrapping
themselves around him. Rest my darling rest.
Wednesday
24th June: Week 1-Day 2
GVAX
Pancreas Vaccine. Six point of injection sites are used: four upon each
upper thigh, and two upon his left arm. The injection sites requires the
main points to be numbed for 45 minutes before injecting. Once injected, the
GVAX Pancreas Vaccine sits under
the skin surface a bit like the TBD injections we had as a kid in Great Briton.
The vaccine is a bubble of fluid and disperses throughout the body
gently. We hope without any reaction. No redness no itchiness, no
scratching no swelling.
Friday
26th June: Week 1-Day 3
Return
to UCSF for evaluation and review any injection site reactions.
Currently there are none, thankfully, but we await the doctors
consult. Our next appointment will be July 16th and 17th, for a
repeat performance of the above and the CRS-207 drug. Each day
visit has been at least 5 hours.
"In this randomized controlled Phase 2a
clinical trial the combination of "CRS-207 with GVAX Pancreas",
demonstrated a statistical significant improvement".
With love – Michelle & Johnny
No comments:
Post a Comment