Today was my six month follow-up appointment with the bone marrow transplant doctor from UC Davis, and he was even more enthusiastic about how well I’m doing than my oncologist was!
I don’t have to see him again for a year. Whoo hoo!
Official x 2
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.
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!
September 11 health update
Tonight I find myself thinking of the day before Christmas when I was a child. Or how my fifteen-year-old-self felt in the days leading up to my first trip to Europe. The anticipation, the preparation, the nerves.
I’m feeling a lot of similarities on this, the final day before my bone marrow transplant week begins. The main difference, of course, being that I was entirely happy and eager about Christmas and that trip to Europe, while a bone marrow transplant inspires a rather more complex mix of feelings. 😏
At any rate, it’s finally here and we’re feeling pretty ready.
A quick recap of what’s ahead:
- Tomorrow (Monday, September 12) is when I receive a high dose of chemotherapy. Even though the actual infusion will only take about thirty minutes, I’ll be at the hospital for a good portion of the day due to necessary preparations beforehand (blood draws, tests, hydration, pre-meds, etc.) and afterwards (more of the same).
- Tuesday, September 13 is a “rest” day, but we’ll still report to the hospital first thing in the morning for tests, hydration, etc.
- Wednesday, September 14 is the actual transplant (or “replant”), when they infuse my stem cells back into my body. That’ll be another long day.
- From that point on, it’s simply a matter of managing any side effects from the chemo and waiting for my stem cells to get to work rebuilding my immune system.
Because of the Labor Day holiday we had a bit of a break after the stem cell collection, so we tried to make the best use of our time to stock up on groceries, catch up on tasks, and record a couple of videos.
The topic of the last Sunday service we attended before leaving for Sacramento was “How Should We Meet Our Tests?” Not surprisingly, it hit pretty close to home, and we were inspired to perform a medley of three songs which we felt conveyed the essence of how to successfully meet one’s tests: guidance from God and Gurus; being part of a spiritual community; and music — especially singing!
Many people shared that they really resonated with those songs, so we decided to create a video of the medley to share with everyone.
And that’s it for now. As always, thank you for your prayers and loving support.
Collection finished
If you’re like me, you probably never heard the term “apheresis” before, so a definition might be a good idea:
“Apheresis is the process of withdrawing blood, filtering something out of the blood, and then putting the filtered blood back into the body, using a cell-separating machine.”
In my case, the goal of apheresis was “collecting adequate numbers of peripheral blood stem cells for transplantation,” which I’m glad to report was successful.
A minimum of 3 million stem cells are required for the bone marrow transplant. It took two days, but they were able to “harvest” a total of 3.8 million from me.
I’m feeling a little tired and somewhat drained. Strange in a way, since all I did was sit there while the machine did the work. But it’s not that surprising really, considering the entire volume of my blood was removed and returned to my body four times on each of the two days.
Modern medicine really is quite amazing.
August 17 health update
My update in a nutshell: All systems are GO!
I’m no longer visiting Sierra Nevada Memorial (the local hospital); UC Davis Cancer Center is our new medical home base. In fact, Dr. Hung has passed the baton to Dr. Aaron Rosenberg, the multiple myeloma specialist who is shepherding us through the bone marrow transplant process.
Last week we met with a physical therapist who okayed me for an outpatient BMT. (We learned that this has only become an option in the last year and a half!) We also met with Lauren, our transplant coordinator, who went over lots and lots of details with us.
We were in Sacramento again this past Monday and Tuesday, getting the full scoop on the house where we’ll be staying; having lots of blood drawn for labs; meeting with Dr. Rosenberg; and receiving instruction from another nurse on how to give injections at home (which Ramesha will be doing).
Next Wednesday, August 24, Ramesha and I will relocate to Sacramento for six weeks.
There will be a whole variety of appointments over the weeks that follow (COVID tests; labs; line dressing changes; doctors), but the important dates that we want to share with you all are:
- Monday, August 29, which is when they begin collecting my stem cells (an all day process). Hopefully they’ll be able to “harvest” enough in the first day or two, otherwise it could take as many as four days.
- Monday, September 12 is the day I receive the high dose of chemotherapy.
- Wednesday, September 14 is Day “0”, when they put back (or “replant”) my stem cells.
From that point on, it’s all about engraftment: “a process in which transplanted stem cells travel through the blood to the bone marrow, where they begin to make new white blood cells, red blood cells, and platelets.” This can evidently take anywhere from two to six weeks; obviously, I’m rooting for two!
This is the time when I’m likely to feel the most unwell, due to the effects of the chemo, coupled with the lack of an immune system. I’ll visit the hospital every single day as an outpatient (it’s only a three-minute drive from the house where we’ll be staying) and if I develop any symptoms of illness at all they’ll immediately admit me to the hospital.
I must say that I’m beginning to understand just how amazing our immune systems are! I don’t believe I’ll take mine quite so much for granted ever again.
Well, that’s pretty much it, my friends. Thank you again and again for all your prayers and good wishes. There are no words to express how much Ramesha and I love and appreciate each and every one of you. 💗
My astrological bangle: as good as new
The great Indian master, Paramhansa Yogananda, recommended the wearing of an astrological bangle to strengthen one’s aura and deflect or mitigate negative karma.
In Autobiography of a Yogi he wrote: “Just as a house may be fitted with a copper rod to absorb the shock of lightning, so can the bodily temple be protected in certain ways.”
When I first found Ananda, all my new devotee friends were wearing bangles, but I figured it would take me years to save up in order to buy one for myself. After all, the bangle is made of gold, silver, and copper, and — even back in 1999 — new ones cost a pretty penny indeed!
What I didn’t know (but was about to learn) is that Divine Mother will sometimes fulfill our need before we’re even aware we have it.
I had accepted a job as school secretary for Ananda’s Living Wisdom School, which was kind of crazy to start with, considering that I knew almost nothing about the areas I was now responsible for!
The school was in the same building as the Ananda church offices, so one afternoon as I was passing through the boutique my friend who was the the office manager, called me over and introduced me to a former church member.
Turns out this woman had come in because she was no longer using her astrological bangle and wanted to sell it. My friend, Stephanie, asked her how much she was selling it for and the answer was $500. Then Stephanie turned to me and asked if I was interested. Of course I was, but I didn’t have $500!
Without a moment’s hesitation, Stephanie turned back to the woman and asked whether she would be willing to take payments of $50 a month. Again the answer was yes, so Stephanie’s next question to me was whether I could handle that.
And in the space of about ten minutes I had my own bangle which was completely paid off within ten months!
Here’s the kicker: only a few weeks later the school experienced a major upheaval; a time of severe stress involving all the teachers and staff. I was still very new — not just to the job, but also on the spiritual path — and the drama of it all really threw me for a loop. But at least I had the energetic support of my astrological bangle!
In retrospect I understood that Stephanie had served as Divine Mother’s channel to make sure I was protected.
As the time grows closer for Ramesha and I to relocate to Sacramento for my bone marrow transplant, I started feeling like it was time to get my bangle checked out and cleaned, which I hadn’t done for probably fifteen years.
I finally contacted Bhima of astrologicalbangles.com just a few days ago, and after replacement of the silver and copper, cleaning, annealing, and polishing, my bangle is as good as new — ready to support and protect me through these upcoming challenges.
Learning a LOT
I almost feel like I’m back in school, I’m learning so much these days.
It’s especially interesting because I’ve never had all that much interest in science. In fact, I regularly cut my high school biology class and was not terribly enthusiastic about my one required chemistry course at junior college.
But I just spent a considerable amount of time this evening reading about blood platelets and ways to increase them, in order to stay as healthy as possible through the bone marrow transplant process.
Indeed, Ramesha and I are becoming accustomed to medical terms like apheresis, subcutaneous, spirometer, autologous, and allogeneic. And we’re even beginning to understand them!
July 20 health update
It’s been a while since my last health update because there hasn’t really been much of anything new to share.
We’re moving full speed ahead towards the bone marrow transplant, which means a lot of “pre-op” appointments (pulmonary function test, echocardiogram, EKG, chest x-ray, etc).
We definitely have a place to stay for our six weeks in Sacramento (a five-minute walk from the hospital).
I continue to feel really well. My current focus is to do as much as I can to raise my energy, increase my magnetism, and open up to divine grace. This is in order to better achieve my goal of rebuilding my immune system and being fully recovered in record-breaking time.
All that said, there is one requirement in preparation for the transplant that I’m definitely not thrilled about, which is doing another bone marrow biopsy. They have to get right inside the bone and aspirate (or suction up) the marrow, and — although it only lasts for about 10-15 seconds — it’s really, really painful because there’s no way to “numb” you inside the bone.
I survived the process once, and I’m also reminding myself that I’ve successfully walked on hot coals, as well as giving birth. I know I can do it, however extra prayers this Friday, July 22 from 8:30am-10:30am (PDT) would be very welcome!
With much love and gratitude always. 🙏💖
Picking up the pace
It’s mid-July and the bone marrow transplant is suddenly feeling really close.
Things are certainly speeding up, especially in terms of fitting in appointments. In the next week and a half I’ll be having a pulmonary function test; a chest x-ray; a chemical stress test (which evidently is a two-day process); and another bone marrow biopsy (oh joy!).
And all this is in addition to my usual labs, weekly chemo injection/infusion, and physical therapy appointments.
I’m going to be a busy girl!