It’s about time for a quick update on my medical situation, which I hope will be my last for a long while. I had been planning to have a second corneal transplant (in my right eye this time) in October, but some low white blood cell counts made that inadvisable; it would have been elective surgery, in any event, and my eye doctor felt it would be better to wait till my immune system was more robust, which probably pushes the earliest date for this procedure into 2018. More worrying was the fact that my white blood cell counts had been steadily declining for a few months, and thus my oncologist wanted to see if there was an obvious reason for that phenomenon. I therefore had yet another PET scan (we’ve lost count, but reckon it was my tenth) and another bone marrow biopsy (my second, and I hope my last, since they really hurt). Neither showed any signs of recurrent lymphoma (B-cell or T-cell), nor any other indications of something sinister brewing. They ruled out lymphoma after the scan, and the biopsy revealed nothing resembling leukemia, which was certainly good news. There was no clear indication of what caused the dip in my WBC counts, which may have contributed to the very bad stomach upset on Hallowe’en (it felt like food poisoning to me) that sent me to the hospital for a couple of nights. After some neupogen (a drug which, when injected, boosts white blood cell production), my WBC counts have stabilized somewhat, though they remain a little below normal, and it seems that there is no cause for concern for the time being. Needless to say, I am relieved that this episode seems to be over; I have been lying low in recent weeks, in part to minimize risk to my immune system, and in part to brace for potentially very bad news that, thankfully, never came. I am eager to resume normal activities, such as they are in my very different post-transplant life, and am looking forward to a reasonably calm and pleasant holiday season. So Happy Thanksgiving, everyone; in case of scarcity, you can add an extra dose of gratitude to the mix on my behalf.
Here’s an update on my current condition. As most of you know, I’ve suffered two types of lymphoma over the past two years. I’m now happily in remission from both, but the ongoing effects are considerable.I suffered acute graft-versus-host disease after the stem cell transplant I had in January 2016, with severe complications in my gut and (most surprisingly) a complete loss of vision thanks to corneal scarring. My vision has gradually improved since then, and in June of this year I had a corneal transplant in my left eye, which has improved my vision to the point that I can read and write again, though it’s not easy. I continue to take a lot of medications and undergo treatment twice a month to control my chronic graft-versus-host disease, which causes ongoing gut discomfort and low energy.
I have taken disability retirement from Sac State and have no plans to return, preferring to focus on my roles as husband and father, as well as to explore a variety of short- and long-term writing projects. I have good days and not-so-good days, physically and otherwise, but the former are outnumbering the latter by a widening margin. My levels of strength and energy are vastly improved from a year ago, though not by any means back to pre-cancer levels. Most importantly, I am very glad, very grateful, and very lucky to be alive.
As some of you may have already heard, we got some good news recently: Brad had a PET scan a few weeks after returning from New York, and it was clear. Also, his recent blood tests have shown no traces of the Epstein-Barr virus that was causing his B-cell lymphoma.
As a result, the doctor in charge of the clinical trial in New York has moved him to the second phase of the trial: monitoring. This means he won’t need to return to New York in the near future, but that the treatment offered at Sloan-Kettering will still be available if the cancer should return. As part of the monitoring phase, he’ll be scanned periodically to check that he remains in remission.
We’re all deeply relieved that he has no active disease, is feeling relatively well, and is here in California instead of New York. He is now back to the long slow recovery that the new cancer diagnosis in the fall so rudely interrupted. Brad is able to see friends often (don’t hesitate to text or call Brad if you’d like to have lunch or coffee; his vision still isn’t up to checking email) and we are able to spend a lot of time together as a family—a boon for us all.
Editorial note: Kate here, posting this on Brad’s behalf–he, in New York, dictated it to his mother Susan. Brad’s notes on today’s developments!
Since our last post, quite a bit has happened, but we finally have some definitive news to share. Shortly after we posted, Brad began Rituxan treatments. They were done in the cancer center, once a week, and had very few side effects beyond making him feel tired. (He even kept his beard, which has regrown since his transplant.) At the same time, his oncologist drastically reduced the amount of immune suppressant medications Brad was taking, in an effort to get his immune system back up and running so it could effectively fight the Epstein-Barr virus that was causing the new cancer. We know the immune system got right to work, because he had a new flareup of graft vs. host disease—fortunately, it was comparatively mild and came in the form of a not-too-bothersome skin rash. This has been quickly controlled with steroids, and now Brad feels relatively well.
The best feature, by far, of the past month has been that Brad’s doctor cleared him to fly (more on future destinations in a minute), and so for the week of Thanksgiving we took a family trip to Hawaii. Luckily, Brad got on the steroids right before we went, and while we were there he had comparatively good energy. A family vacation was exactly what we all needed and we got to spend a lot of time poolside and enjoying ourselves at the resort we stayed at. Brad was able to go swimming, we met up with good friends who happened to be vacationing nearby, and we took a day trip for shave ice, shrimp truck lunch, and checking out the waves on Oahu’s North Shore.
We got back last Friday and on Monday Brad had a PET scan to find out how well the treatment has been working. The news was overall positive: while he still has evidence of disease and a few lesions, the Rituxan (combined with reduced immune suppression) worked to shrink the cancer considerably. Its results were a lot better than his oncologist had initially cautioned us to expect. It feels very weird to say that a scan showing cancer is good news—but compared to how much cancer there was before, it really is. It also leaves Brad eligible for a very promising clinical trial, one his oncologist feels is his best treatment option. The trial takes place at Sloan Kettering in New York (yep, 3000 miles away) and now that we have scan results, Brad’s first appointment is next Thursday. (Let me just say, it is taking a lot of restraint not to riff on the lyrics to “New York, New York” in this post.)
So, we are now in full logistical scrambling mode to make this happen. Kate will stay home with the girls, whose primary concern is whether their dad will be home for Christmas. (It’s touch and go; the treatment lasts for 3 weeks, so we just aren’t sure if they can complete it in time for him to fly home.) Brad’s parents will go to New York to stay with him, and we are so very grateful to them for their invaluable help. For any of our readers within easy distance of New York, Brad’s treatments will be just once a week, and he will have a lot of down time and would love to see friends. If you’d like to visit, call or text Brad directly (or if you don’t have his number, please message Kate and I’ll put you in touch). We’ll update again when there is news from Manhattan.
We wanted to post a quick update on our news of nearly two weeks ago. Earlier this week, Brad had a liver biopsy, and on Friday afternoon we got the results, which confirmed indeed that he has a new kind of cancer. This time, it’s a diffuse large B-cell lymphoma, which is a fairly common type of lymphoma but in his case is a post-transplant lymphoproliferative disorder, prompted by his Epstein-Barr viral infection. His oncologist is proposing to treat it with rituxan, an antibody therapy that has been very effective against B-cell lymphomas. (In general, there are more effective treatments out there for B-cell lymphomas than for the rarer T-cell types, so that’s a glimmer of good news.) Rituxan is usually better tolerated and less hard on the body than traditional chemo regimens, an important consideration given Brad’s weakened post-transplant state.
Treatment should start next week, and given how fast this new cancer has been growing we are both very glad they have a plan and are moving quickly.
Dear friends and family, we had hoped that we could let “no news is good news,” from the last post, stand as the last-ever update on this blog. We are terribly sorry to say that isn’t the case. There’s news, and it is not good. Yesterday, we learned via a PET scan that Brad has more evidence of cancer. We are awaiting a biopsy to confirm the diagnosis, but his oncologist believes it is almost certainly a new type of cancer, a B-cell lymphoma called post-transplant lymphoproliferative disorder. It is caused by an Epstein-Barr viral infection, which his immune system (suppressed by the post-transplant medications) cannot fight effectively; the B cells proliferate aggressively (hence the name), causing tumors. This is a rare, but known, complication of immune suppression after transplant and is more common in solid-organ transplants.
Needless to say, this was the very last news we wanted to hear or have to share. Brad’s course of treatment is not yet certain, pending the biopsy. It is, however, clear that a very difficult road for our whole family lies ahead. We are grateful for all your good thoughts.
—Brad and Kate