Cancer Diva Adventures: What Goes Down Must Come Up . . .

As in mood.  As in functionality.  Sometimes you're down, but you just gotta get back up.

Tuesday was day 10 of of the "interventions" (i.e. injecting substances into and removing substances from my body)  in cycle one of  the Johns Hopkins (JH) clinical trial that I am participating in ("my" clinical trial).  It began well enough (as in, I woke up,--always a good start); got out of bed within minutes of my alarm going off and before Perfect Husband (Ph) had to harass me into waking up (a chore that I request of him); there was no flooding or power loss chez nous; and the front page of the Washington post was not horribly deptressing.   I even left the house before 9 am, a somewhat heroic feat for me.  Angel Clinical Trial Nurse M (AM) had advised that I really really needed to arrive by 10 am and, having often (always?) been late,  I really really did not want to disappoint her or screw up the schedule.  AM is a major positive force in my life these days and an all -around hardworking, calm, efficient and caring person. 

I decided to drive to Hopkins myself--which should be just fine, right?  I know how to drive; have a GPS; and am not overly fatigued.  Last week, beautiful older sister (BOS) visited and went to JH with me every day, which was fantastic.  Ph offered to accompany me, but really wanted to attend a meeting on Capitol Hill, and I agreed that he should do that.  And yes--I have outstanding (as in good, as well as not yet accepted) offers to drive/go with me . .  I know, I know, cousin M, friends C and J, neighbor B, I could have called you . .  but I really thought this would be fine.  Not a big deal.  (Note: I have since arranged with cuz M to accompany me to my next JH appointment & lunch!)

I cruised north on I-95, sipping coffee and switching between NPR reports on SCOTUS decisions and the XM radio Spectrum station (my car was still in neverending body shop mode from car chase/collision & Ph let me use his car, which has XM :).  Plenty of time I had.  Then I hit downtown Baltimore and traffic.  9:40 became 9:45, 9:55 . .  I could sense that upon arrival and taking of my vital signs, my blood pressure (normally so low that I'm prone to passing out) would be above normal.  Damn.  Drove into parking garage.  Handicapped spaces, radiation oncology spaces, pickup of discharged patient spaces, no Cancer Diva spaces.  I finally squeezed Ph's SUV  into a space and raced through the garage, through the lobby, darting around people in wheelchairs and with walkers;

scanned my orange JH patient card at reception; scanned in at oncology (I may be the fastest ever patient between those two scanning places); ran past rows of waiting patients; checked in at the phlebotomy (aka the drawing blood, bloodletting, venipuncture) desk.  It was 10:05.  I stood, paced. AM popped her head out and said "oh, we're running behind; everyone was late today because of the traffic."  Oh. Well, I'm really glad I'm not late.

Then I realized I forgot my water bottle; left it in the car.
Then I got called in to have my port accessed and blood taken and the phelobotomist person (PP) asked me what kind of port I have.  Damn. I have been asked this question at least six times in the past 10 days, because my Sibley Hospital (surgically)-installed-port is a different type than they insert at Hopkins, and I keep forgetting to find the port "card", that I apparently should carry with me at all times.
Then I realize that I forgot to put lidocaine on my port in advance, to prevent minimize the pain of the needle stick.
Then the needle stick didn't actually hurt so much, but I quietly began to cry anyway, because I felt alone with no one there to get me a water or to have reminded me about the lidocaine. The needle stick didn't hurt at the skin level, but it did hurt more deeply.  I know that there are many people in the world that love me, but none of them were right there with me at that moment. BOS would've remembered all of that, and been sitting there using her own needles.

I realized how much I missed her. 

I felt a bit embarassed to be 57 years old and crying in public for something that was not physically painful, but they were quiet, minimal tears.  It is likely that no one except PP noticed, and she seemed very nonjudgmental.

Then, enough.  It was time to pull myself together.  Things started looking up.  AM arrived to shuffle me to the next procedure, and she and "Robert" ( his real name, and I don't know his title) informed me that oncology patients actually can use the valet parking service for free.  FREE!? Ding! Now we're back to Diva territory!  

I brightened up and chattered AM's ear off as she checked and measured all 12 vaccine injection sites, asked about side effects, checked my Vaccine Symptom Worksheet (VSW),

and took (yet another) skin biopsy (briefly painful).  I shut up for a bit while I listened in to a conference call (mostly on mute, so no one would hear my "OWWW!" during the skin biopsy.)

Before heading home, I decided to get a latte at "Grand Grounds"

(get it?) just off of the cancer center lobby, right next to the meditation room.  Meditation room??

Yes, BOS and I found it on Saturday; spent some quiet time there, and I promised myself I would try to find time to meditate every time I visit JH. It is a lovely small room with stained glass windows, about 10 chairs, and an array of books and paraphernalia for virtually every religion one can think of.  I chose a non-religion--transcendental meditation (TM, not to be confused with trademark)--which I learned in April, with wonderful teacher JG, but during a very stressful week.  I have not maintained my meditation practice, but why wait? Just do it, right?  Twenty minutes of silent meditation later, I felt much more peaceful; purchased my caramel soy latte (no, I was not peaceful enough to skip the latte) and was ready to hit the road, back to DC.

The road is long . .  there are mountains in our way . .  but we climb a step every day . . .

Love lift us up where we belong . .   where the eagles cry, on a mountain high . . . .
Joe Cocker, circa 1070s

Yours, lifted up and back in DC,

CDiva