Be Still My Soul

It’s February.  We’ve turned another page in the calendar…I shared recently that I feel stuck between two epic life experiences, the loss of a child and a terminal diagnosis, which makes the passage of time complicated.  The challenge to live in the moment and not get overwhelmed by the grief of the past or the anguish of the future continues to require a daily conscious effort.  Embracing “today” continues to be the priority.

The past couple of weeks have been filled with a balance of time with good friends and family along with continued disease management.  My permanent port was placed on Friday January 26th and my second round of Radicava infusions started today with the new port.  The port has been more tender and cumbersome than I expected but it is healing nicely and, I suspect, will become second nature in time.  I also started to take a low dose anti-depressant medication which seems to be helping to take the edge off a bit.

At the urging of my local neurologist, Rolf and I visited the multi-disciplinary ALS clinic at Cedars Sinai in Los Angeles on January 31st  (I’m including Rolf’s detailed notes from the visit below for our records.)   I can’t say I had a strong felt need to be assessed again and I wasn’t particularly motivated to make the trek down to Cedars but we did get some helpful information and I’ll probably go again in 6 months.  The sobering reality that is reaffirmed with every consultation I go to is that no matter the state of the art facility or the resources at hand, all anyone can really offer me is confirmation that this is a “devastating” diagnosis and the promise to keep me comfortable down the line.  Ugh.  There’s a big part of me that wants to gracefully back off and just live my life out naturally without medical intervention but at the same time I have this Charlie Brown-esque hopefulness that maybe, next time, the football will stay put…that maybe our determination and commitment to the process will result in something tangible.  I don’t know…I wish I could make sense of it all…I wish I had a strong feeling one way or the other and didn’t respond to each recommendation with “well, it couldn’t hurt”…I wish it wasn’t all so vague and subjective.  Blah, Blah!!

ROLF’S NOTES:

Cedars-Sinai ALS Clinic visit summary

On Wednesday (1/31), we visited the Cedars-Sinai ALS Clinic.  We were told ahead of time that we were only scheduled for a “consultation” and not the full clinic, as insurance will only approve the latter after a referral from an initial visit with a neurologist.  Even so, Dr. DaSilva called ahead to see if a few other specialists would be able to stop by while we were there and we were very glad this was the case–made the drive worthwhile.  We arrived at Cedars at 8:45, got checked in shortly after 9 and were quickly taken to an exam room–where we stayed until almost 1pm.  There were a few breaks of 15 min or so, but for the most part it was a steady parade of doctors, therapists and a few of what I call “PUPs” (People of Unclear Purpose–hospitals are full of clipboard carrying mystery people that come in and ask you questions.)

We started with a pulmonary function test and then Dr. Elsayegh (Pulmonologist) came in for a consult.  There was good news here as Dr. E explained that the lungs are a key determinant in ALS.  As difficult as it is to lose functionality of extremities, etc., when the muscles that facilitate breathing get impaired, then major interventions have to be considered (breathing machines, traches, etc).  The good news here is that Trish’s lungs function is exceptionally good.  I forget the exact units, but typical lungs function at 80% and when things decrease to 60 it gets problematic.  Trish was at 102 (probably thanks to all her singing), which means there’s considerable margin for her. While no one can predict how quickly the disease progresses in any individual, this could make for more of a time window.

After that, we got a very thorough exam from the neuro fellow before Dr. Lewis (Neuro) came in.  Dr. Lewis was unhurried and spent quite a bit of time with us doing his own exam, answering questions, and explaining research studies.  It’s reassuring to have the attention of a very intelligent and compassionate expert, but if only he didn’t have to employ his gift of communicating clearly and caringly about really difficult realities:  it’s a devastating diagnosis, there are no cures, no clinical trial out there is anywhere close to landing on a cure.  There are two research studies Cedars is conducting that Trish agreed to participate in as they only involved interviewing and a blood draw, so Dr. Lewis spent even longer with us conducting the study exam and interview.

After that came a speech therapist, dietician, ALS Association rep and probably a few more people I’m forgetting. The whole session was clearly being coordinated and there seemed to be good communication between the specialists, which was both efficient and caring.  It’s impossible to tell the story of Trish’s diagnosis without bringing in Rudy’s death in July, so it was a comfort to not have to repeat the story too many times–most people came in aware and led off with compassion.

I can’t say we didn’t walk away a bit disappointed.  We’ve learned from HLHS and ALS that, as much as you try to keep grounded and aware that a diagnosis is terminal, there’s still a part of you that goes into every appointment wishing you’d hear someone tell you there’s a cure.  But it is what it is.  What we can be thankful for is the assurance that we’ve got good care.  The Cedars team would see us every three months if we’d like but since so much of what they said affirmed the care we are getting here in Santa Barbara, for now we will plan on seeing them every six months–unless a need arises before then.

I was going through some old CDs the other day and came across an original CD my friend Grace recorded over 15 years ago!  She invited me to sing two of her songs on the project and I was struck by the timeliness of them for me now…kind of prophetic and a sweet encouragement from a young Trish and Grace…

Closer To His Heart:

Be Still My Soul:

Speaking of encouragement, here’s some more…

I’m being well taken care of on so many fronts and a great example of that is my good friend Rick who went above and beyond to make sure I have a secure cup holder on my walker and a custom-made ramp up to the worship platform at church!  🙂  Ha ha!  I am blessed and I’m so very grateful for the ongoing show of support from so many…as we’ve been reminded multiple times this past month at all my appointments, this is going to be a long road and I’m so grateful the Geylings aren’t doing it alone!!