ALL IN WITH NANCY UPDATE #135
Greetings.
This is the one hundred and thirty-fifth in a series of NANCY UPDATES I have posted-- now celebrating the fact that even though her post bone marrow transplant and brain seizure recovery continues... the amazing Nancy Neufeld Callaway is still in full remission and has kicked her leukemia on its ass.
Once again, it's been awhile since I updated this blog. But in addition to trying to get on with our lives-- there was also that whole global pandemic thing.
And unfortunately, the Sunshiny Superwarrior Goddess has had other difficult issues to deal with, as well. Because it turns out those eye issues I told you about in the last blog post back in 2019 have taken a bit of a turn for the worse.
As I've mentioned before, between high dose chemo, radiation, and a bone marrow transplant—you know there are going to be all kinds of different potential side effects. For Nancy, it happens to be her eyes—with all kinds of acute dry eye problems. She’s seen literally dozens of doctors and taken all kinds of medicines over the last few years to try to manage the symptoms. But it’s all basically the trade-off for staying alive.
2 MONTHS AGO, NANCY'S LEFT EYE BEGAN ACTING UP
Things suddenly took a turn for the worse with her left eye. She developed a corneal ulcer—basically a small open wound on her left cornea. It hurt really badly and obviously impacted her vision in that eye. In addition to our trusted family ophthalmologist, she started seeing a number of corneal specialists at the UCLA Stein Eye Institute—who were surprised by just how fast things deteriorated. Her cornea rapidly began to thin—first by 40%, then by 60%, then by 90%. The doctors began seeing her pretty much every day, including weekends—and were ultimately forced to glue her left cornea in order to keep it from rupturing, which could force her to get a corneal transplant in order to save her vision. Yes, they literally use surgical superglue—and have now had to do it three times. They’ve also placed a protective contact lens over her eye. And she’s been forced to take some very heavy steroids to speed healing—which have been pretty rough on her mental and emotional state. As they searched for the cause of the ulcer—the specialists began to suspect some kind of systemic, immunological issue. So they also sent her to a rheumatologist for an indepth series of tests. She was tested for rheumatoid arthritis, lupus, Sjogren’s syndrome, hepatitis, ocular herpes, and all sorts of other conditions which are known to impact the eyes—but all those tests came back negative.
Nevertheless, the UCLA rheumatologist, after conferring with her City of Hope oncologist, decided to put Nancy on a broad based “steroid sparing agent” called methotrexate so she can hopefully get off the heavy steroids ASAP.
The good news is, for the past two weeks, her eye specialists have at least been happy to see the situation with her left cornea stabilized. Some of them are even hopeful that her cornea will still be able to heal itself without the need for a transplant. Others are not so sure. But in the meantime…
2 WEEKS AGO, NANCY'S RIGHT EYE BEGAN ACTING UP
When Nancy suddenly started to experience pain and blurriness in her right eye—the doctors immediately jumped on it—and diagnosed her with an epithelial defect, or “scratch” across the surface of her right pupil. They quickly put a protective contact lens over that eye, as well—and gave her even more meds to take.
The good news is, as of this week, the scratch appears to have healed. But the bad news is—like any scratch—it has left an elevated ridge of tissue across the surface of her eye that is continuing to impact her vision.
NANCY’S CURRENT VISION
Currently, between her two eyes, Nancy can barely read her phone, computer, or any printed words that aren’t absolutely huge. Everything looks like a white fog. So know that when you text or email her—she probably can’t read it—even after I magnified all the type on her phone and computer to the largest sizes possible. So it’s best to call directly or send voice texts if you want to connect with her.
PROGNOSIS
The doctors are telling Nancy that the vision in her right eye should restore itself over the next two weeks as that elevated area of tissue continues to heal. As for the vision in her left eye—we’ll just have to hope, wait, and see if the cornea heals. If not, she’s either looking at a partial corneal graft or a full corneal transplant.
Of course, ALL of this is exacerbated in every way possible by Nancy’s memory issues. In fairness, her daily treatment regimen would be confusing for most people, without memory issues. But because it’s often difficult for her to remember exactly what the doctors have told her—sometimes only hours later—she is easily discouraged by all of this. Every day feels like waking up to some new fresh hell for her. So my hope is that by sharing all of this information with you—you can encourage her and help her keep track of her progress.
So thanks in advance for that encouragement-- not to mention your healing energy and prayers as she continues to fight her way back to wellness.
WE LOVE NANCY, and...
ALL IS WELL!
If you'd like to register for the International Bone Marrow Donor Bank, here's a link. You could be someone's cure. You could literally save a life.
If you'd like to donate to City of Hope and help them continue their tireless efforts and research to stop cancer, there's a link for that as well.
City of Hope Online Donation
And if you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture, click SUBMIT, and follow the prompts!
