Just a beautiful thought to take into the weekend. 💗
Long yesterday, short today 😉
September 29 (LONG) update: yesterday’s big adventure
On Tuesday we thought we were pretty much done. I was even looking forward to finally having some time to reply to at least some of the many, many beautiful messages I receive every day.
Ha ha! When will I learn?!? Divine Mother was far from “done” with us! 😄
As you’ll recall, we were discharged from the outpatient AIM clinic on Tuesday. On Wednesday we slept in (oh joy!), had breakfast, then went to get the car washed (finally!). Although I was taking it very easy (I thought) after we got home, I noticed a slight shortness of breath. “No big deal,” I thought.
But when Ramesha checked my pulse a little later, he reported it was quite irregular. “Well, I’ll be able to get it back to normal like I did before,” I thought. Then a bit of denial must have kicked in because I continued to feel slightly short of breath and a little funny, but somehow convinced myself it was okay.
Our big project of the day was shaving the rest of my hair; large patches of my scalp were already bald, so it was time. We actually had a lovely time, with Ramesha using a variety of razors to accomplish the goal.
So, it wasn’t until the late afternoon that I casually asked him to check my pulse again because I thought it was maybe still irregular. And at that point he took over like the caregiver supreme that he is, having me try different techniques to see if they would help while he called the AIM clinic.
Our nurse friend Michael had a few suggestions, but because we were already discharged from AIM, he urged us to call our BMT coordinator, Lauren. By now it was 5:00pm, so I was even surprised to find her still in the office and I felt bad for bothering her with this at the end of her day (again, when will I learn? 🤦♀️).
She checked in with the doctors then called back to explain that they didn’t want to take any chances with it developing into lightheadedness or passing out, so she had already called the Emergency Department to arrange for us to go in and get it checked out.
And thus began our Big Adventure!
The short version is that we spent nine hours in the UC Davis Emergency Department, with the end result being that I am fine but now take hydration and potassium way more seriously than ever before. Read on if you want the details.
- An initial EKG confirmed that I was in atrial fibrillation. I was brought to a room and after I had changed into a hospital gown, they hooked me up to a monitor. It kept shifting into an obnoxiously loud beeping because of the AFib; at some point the heart also started greatly speeding up, same as on Sunday. At one point a doctor asked questions to clarify how long it had been going on; in the moment that he confirmed it had been happening for at least five hours is when I began to understand just how foolish had been my resistance to acknowledging what was going on and reaching out for assistance.
- After some initial confusion, our “angel nurse” Maria came on the scene and took charge of getting fluids in me. I figured it would be the usual IV drip, but no! She wrapped something around the bag of fluid and pumped it up, which applied pressure on the liquid within. Ramesha told me that rather than a drip it was a waterfall of fluid pouring into me. In fact, within about a minute I got cold and started shivering uncontrollably due to the coldness of the liquid plus the rapidity of the changes inside my body. All the fluid was administered in about five minutes and after another couple of minutes I stopped shivering again. I’ve never experienced anything like it. The good news is that my heart also responded right away, settling down into a regular rhythm and pace.
- Although it seemed likely that lack of hydration was what triggered the AFib, the remaining eight or so hours were about the medical team ruling out any other possible causes. That meant multiple blood tests, a CT scan, and an X-ray in order to rule out infections, blood clots, issues with the catheter in my chest, or any actual damage to the heart. Unfortunately, it required lots of waiting, since any life-threatening trauma emergencies would (of course!) jump to the front of the queue.
- Equally unfortunately, we didn’t bring any food (except one protein bar that happened to be in Ramesha’s backpack) because we would never have imagined being there so long. It also turned out that I wasn’t allowed to eat in case they discovered anything serious that would need immediate surgery or some other intervention.
- At first, we just had a laugh with Divine Mother; I mean, we’d spent fifteen days showing up at 7:30 every morning, which naturally resulted in going to bed earlier and earlier. Anyone who knows me at all would have been amazed to see me in bed with lights out by 9:00 or 9:30 every night! Then the night of the very day that routine ended we find ourselves awake in the hospital until 3:00am, instead of waking up at 3:30 or 4:00am. Though I’m afraid we weren’t laughing so much by hours six or seven. 😕
- There were blessings throughout, of course. The amazing medical personnel. Ramesha being able to complete his (modified) sadhana even in the ED. Being so desperate to pass the time (and forget our hunger) that we started singing together (quietly). Lessons learned. And, as always, feeling the prayer support of friends and family around the world.
- Epilogue: This morning we had an appointment to get the catheter in my chest removed (It’s been in for a full month, so you can imagine how ready I am to have it out). We knew it would be a short night but figured we’d do the appointment then come home and sleep. Well, we had one more surprise coming. Just as we were heading out the door for the appointment Lauren (our BMT coordinator) called to say that my doctor wants me to keep the catheter in for now so that I can continue receiving additional hydration in the coming days. Yet another instance of soooo looking forward to something expected, only to be disappointed when things change.
Needless to say, it’s been a slow day of nothing but resting, eating, napping, sitting in the sun, eating again, reading, and finally finding the energy to share our big adventure with all of you.
Love,
Sharon & Fabio (aka Bhagavati & Ramesha)
My new look
I thought this would be the most interesting moment of my day.
Ha ha ha!
As they say, life is what happens while you’re making other plans.
More tomorrow… 😍
September 27 health update
SUCCESS!
As of today (Tuesday, September 27) I am officially discharged from the outpatient bone marrow transplant unit!
The last big “hiccup” was on Sunday, when my heart started racing. An EKG showed it was out-of-sync and the doctors thought I might need medication to slow it down and get things back to the correct rhythm. But thanks to IV fluids, prayers, and meditation my heart rate went from 130-ish down to 80-ish in the course of an hour.
Turns out the reason my heart went whacky was because my body was working so hard on rebuilding my immune system. As you can see below, I had 0.1 white blood cell count on Sept 22 (the first red circle), 1.0 two days later, a dramatic increase to 5.2 on Sunday, followed by even more exponential increases of 18.2 and 19.6. Way to go, body!
Because of the heart episode I had to take things really easy yesterday (Monday) and they gave me tons of fluid, potassium, and a blood transfusion. But today during their rounds the doctors said I was done; it was almost a little bit anticlimactic (what, no fireworks?!?). 😂
I sincerely hope to never have to go through anything like this again, but I’m extremely grateful that the option was available.
We’ll stay near the hospital for the next few weeks while the recovery process continues, but we no longer have to report to the AIM clinic at 7:30 every single morning, as we’ve done for the past fifteen days.
Che stufa
There are a few choice Italian phrases that I continue to fall back on, because they’re somehow way better in Italian than in English.
One is “che stufa.” It translates to “fed up”, but che stufa really gets at what I have been feeling today.
It’s kind of ironic because everything is going well, but I seem to have reached my limit for sitting around in a hospital bed doing basically nothing day after day after day.
Maybe it’s because we’re getting close to the end of this particular phase. At any rate, I look forward to sharing more of the latest…just not today.
Next stop is bald
I hadn’t really given much thought to the losing hair aspect of this whole process I’m in. Compared to the discomfort of nauseau and mouth sores and other gastric issues, hair coming out is at least painless.
But now it’s here and I’m beginning to understand that it really is sort of a big deal.
Oh well, it will grow back!
What a trooper!
This whole cancer journey has had Ramesha showing up for me in ever-new ways.
For example, we never could have imagined that he would need to give me injections (like before the stem cell collection). And today he got to cut my hair!
It was starting to bug me because in normal times I would be due for a cut, but in point of fact, my hair is starting to come out due to the chemo, so it seemed like a good idea to go ahead and hack most of it off.
So, my wonderful husband graciously stepped up to the plate and helped me get it done. 😘
September 23 health update & Italy anniversary
We’ve reached Day +9 and I’m beginning to feel that we may have turned a corner.
Days +8 and +9 are when one is at the lowest of the low, so we’ve had to be extra super vigilant about masking, washing hands, checking my temperature, etc.
And, in fact, we had a scary moment on Day +8 in the morning, when the combination of a slight fever, a hot shower, and a small snack resulted in a brief episode of lightheadedness. I felt sweaty and clammy and my voice sounded far away; basically, it was the closest I’ve come to fainting in this lifetime.
Although it passed quickly, the AIM clinic staff weren’t taking any chances, so Ramesha dropped me at the front of the hospital and one of the nurses came to get me with a wheelchair. But I was fine the rest of yesterday and today. In fact, the staff keep marveling at how well I’m looking and doing (prayer works!), so that’s all I have to say about the physical aspect of this challenge.
What’s really on my mind this evening is the fact that tomorrow — September 24 — will mark twenty years since I moved to Ananda Assisi to “help get the music out” in Italy as a member of the Ananda Singers.
It somehow feels significant that my recovery from the bone marrow transplant is coinciding with that earlier, life changing decision.
Once I had found and committed to Ananda, I started gradually moving away from my career as a classical freelance flutist. I started making decisions like choosing to go to a Kriyaban retreat even though it meant I had to cancel a gig. Or choosing to go on the Oratorio choir tour even though it meant missing a concert and recording session with the Women’s Philharmonic.
I don’t think I was aware of it at the time, but clearly the decision to actually move to Italy was me saying: “This is what I now dedicate my life to.”
So here we are, at a crossroads. Our music-making is on hold, but I feel like there’s something deep and profound for Fabio and me that will grow out of this time of enforced inactivity.
It’s like we’re awaiting a new assignment from Swamiji and I’m eager to see what it will look like!
Both epic and small
Maybe some of you are wondering what my life is like right now.
Well, every single day we get up and drive three to five minutes to the AIM clinic of the hospital. Then we hang out there for anywhere from five to eight hours. Multiple times every day they draw labs, check vital signs, etc. Meals are brought to us three times a day. If needed they give me electrolytes or blood platelets or other things to help my body cope. Then we drive three to five minutes home to 48th and U Street and do it all over again the next day.
On the one hand, I feel like I’m doing nothing at all — that my life, my world has been reduced to the mundane questions of what can I eat (not much!)? How did I poop? What’s my temperature?
But on the other hand, we have a front row seat to mind-boggling medical advances. The words amazing and impressive don’t even begin to convey my awe and appreciation for the medical team and the technology they wield.
Bottom line? It’s totally epic and humblingly small, all at the same time.
The 21st night of September
I was scrolling through Facebook this morning, when a friend’s post reminded me that it was the 21st of September — time to boogie!
Of course, I remember this Earth, Wind & Fire song from when it was released back in 1978, but I’ve never really tuned into the fact that many people all around the world have been celebrating the 21st of September like a holiday ever since.
When I put it on this morning (with earbuds, of course) I felt instantly happy.
Then I listened to it again this afternoon and even danced around the room a bit (making up for the walk I didn’t feel up to taking).
Then I found various videos of people dancing to the song and decided this would be the focus of today’s blog post: how a simple pop song can embody so much joy that forty-four years later people are uplifted when they listen and/or dance to it.
This video from Japan is particularly fun. So much energy!