Traveling with Friends

Less than 24 hours after leaving the hospital I was back in. My side-effects conveniently waited until just after I got back to the hotel. My fever started, and I spent most of my time the next day awaiting COVID test results so I could get back into the hospital.

It turns out that these side effects were fully expected by my medical team. I’m not sure why they opted to let me leave the hospital when they did. I think it was probably in the clinical trial plan, and in the absence of any side effects before I left, they were simply following the plan. I felt a little betrayed, but I know that the less I know, the more natural my response to treatment. This is a trial, after all. They are gathering as much information as possible and want that information not to be influenced by any foreknowledge on my part.

The next few days in the hospital were not pleasant. I was pretty sick for those few days, with frequent cycles of fever, sweats when the fever broke, and a lot of fatigue. I was monitored very closely. They took blood tests each day and adjusted my IV fluids, antibiotics, vitamins and other medications. For a couple of days, nothing that I ate tasted good. Nevertheless, I gained several pounds due to the fluids.

But it was all worth it! My once-swollen lymph nodes are almost undetectable to the touch. Most of my blood tests are looking far better. I still have some swelling in my legs and a low platelet count, but I am recovering quickly. At the moment, the treatment is doing positive things for me. we will have more detailed results when I get another PET/CT scan in about six weeks. Roslyn and I are relieved, happy, and cautiously optimistic that this treatment will be successful.

We will be at a UCLA guest house a while longer as observation continues. Our kids are looking after things for us at home in the meantime. Their love and support have been invaluable. They’ve shopped for us, come out to LA to visit and bring us stuff we needed from home, and been positive and uplifting influences for us, every one of them. We couldn’t be prouder of our kids.

Though we never lost hope and looked forward to the future, Roslyn and I can start seeing the future more brightly. We thank God everyday.

Thanks to all of you for your cards, prayers, meals, conversations, and emotional support. We can’t wait to pay it forward.

Hello! I hope you are all having a good day. Here’s a quick update:

Things are going fine here at UCLA Medical Center. I was admitted on last Monday evening and received my re-engineered CAR-T Cells on Tuesday morning. There were seven doctors, nurses and staff in the room at the time. Turns out that this clinical trial (https://clinicaltrials.gov/ct2/show/NCT04007029) is a big deal for them.

Later that evening, several staff members presented me with a “second birthday” piece of cake, a song, and a lovely poster that all had signed. I was surprised and touched by their love and support. For the staff, this job is a calling. I can tell. The staff is phenomenal.

Since the infusion, I have been hanging out in wing 6 East and feeling fine. I’ve been taking walks around and around the wing and doing some light exercises. The food here is good. This is quite the gilded cage.

I hope to get out of here tomorrow. The doctor told me that there are some criteria for me to be released from the hospital back into polite society: no signs of neurotoxicity effects, good liver function, stable vital signs, and a Absolute Neutrophil Count (ANC) above 0.5. The ANC was doing fine until this morning when it was measured just above this value. Low ANC means I am becoming more susceptible to infection, that is, neutropenic. This condition was anticipated and should not last long. If it goes too low, I may have to stay in the hospital until it goes up again. Not a huge deal, though I’m looking forward to getting out of here soon. I’m feeling great otherwise, and I have decent energy.

Best wishes to you and yours. Thanks for the prayers and support.

UPDATE: I probably will not get out of the hospital tomorrow. The doctors and I agree that the trending curve of my ANC numbers indicate that the numbers are likely to go lower before recovering. That’s only a problem if I catch something or get an infection. This hospital wing is specifically set up for vulnerable people, so I feel safe here.

UPDATE 2: I was released from the hospital after all. My blood count numbers rebounded enough for me to get out. Whoo-hoo! 🎉

I’m writing this while having leukapheresis for the second time in a month. Leukapheresis is used to gather some T cells from my bloodstream. The cells are then modified to fight lymphoma, then infused back into my system. I’m having the procedure a second time because the modification process failed the first time due to a manufacturing problem. The problem caused my newly modified cells to bunch together as they grew, making them unsuitable for infusion. The process has been modified for the second round. The problem should not happen this time.

I don’t like surprises like these.

Otherwise, I’m feeling pretty good. I have good and bad days, with fatigue being the main symptom day in and day out. I’m feeling positive about my new treatment. It’s important because it should result in longer lasting results than I get with chemotherapy.

Best wishes to you all!

People sometimes ask me whether it’s worth it to go into UCLA for my treatment. It’s a long drive on the best of days, even with the lighter pandemic traffic. Locally we have many medical resources that have helped many patients put cancer behind them. I tell them that the best reason for me to go to UCLA is that it gives me direct access to doctors that are creating innovative cancer treatments, especially for my type of cancer. And luckily, our health insurance covers UCLA facilities.

I have to admit that not all clinical trials live up to their expectations. The last two I participated in, starting last December, were testing treatments that did not work for me. Both of these treatments were targeted therapies that “marked” cancer cells to make it easier for the immune system to find and destroy them.

So after those recent disappointments, why am I entering yet another clinical trial instead of using an off-the-shelf treatment? My very first treatment in the summer of 2018 was a combination of rituximab, a monoclonal antibody therapy, and bendamustine, a chemotherapy drug. It worked well at pushing the lymphoma into remission. However, the remission lasted only about ten months. The drugs did their work, but the cancer came back. Perhaps there were trace amounts of cancer cells left in my body, or perhaps there is something about my body that continues to produce cancer cells.

I need a treatment that will keep working over time to prevent the cancer from spreading. One promising approach is to bolster the immune system to continuously hunt down cancer cells.

A recently completed CAR T cell clinical trial (which I did not take part in) had excellent results for most patients. I’m about to enter another trial which expands on that successful one by targeting cells in an even more robust way. Both of these are a type of targeted therapy. I have high hopes that I will be one of those patients that responds well to this treatment. The new study is run by UCLA directly. UCLA is a large research hospital that has the resources to fund and conduct such leading-edge studies. One of the doctors I’m seeing is the study’s main investigator.

It’s important to note that successful clinical trials can ease suffering for many people now and into the future. Although altruism isn’t my main motivation, it is helpful to know that I an taking part in such important work.

If you’d like to read more about CAR T cell and other targeted therapies, here are some references.

• What is targeted therapy?: https://www.cancer.gov/about-cancer/treatment/types/targeted-therapies#what-are-the-types-of-targeted-therapy
• CAR T Cell therapy explainer: https://www.cancer.gov/about-cancer/treatment/research/car-t-cells#evolution
• “CAR T at UCLA” explainer video with Sarah Larson, MD: https://www.youtube.com/watch?v=mfJ-NFE7r6s
• Description of the new study I plan to join next week: https://clinicaltrials.gov/ct2/show/NCT04007029?term=NCT04007029&draw=2&rank=1

Best wishes to you one and all. God bless you.

Each Sunday morning this spring my wife and I have attended our church. We’ve enjoyed intimate and heartfelt messages and greeted our church family members. In recent weeks we sang “Happy Birthday” and shared communion. This past week we shared Memorial Day thoughts about people we miss. We’ve listened to beautiful, uplifting music. We’ve prayed together The Lord’s Prayer.

We sat in various places during the service. For us, we choose the family room couch or the dining room table. Regardless of where we sat, we could see and greet everyone.

Our video-based services have felt real and comforting. They’ve felt more participatory, too — we’ve felt more involved in the service. We are given opportunities to join in as little or as much as we want to. For those of us who are unable to join a regular service due to our health, the Sunday services have been an important spiritual and social lifeline.

We would not have this essential service if it were not for the diligent and hard work of Steve and Cindy Davis, our pastor and his wife. With assistance from our organist, from the office staff, and from various church members who sang, read, and prayed for us, the Davises have enabled this church body to continue to meet and find comfort in each other’s company. We feel God’s presence in our meetings.

We’ve experienced the inconveniences and frustrations of quarantine as a corporate body. And we’ve protected our most vulnerable congregants.

Our sincerest thanks to Steve and Cindy, and to all those who work to bring their churches together online every week.

We have a beautiful facility which I look forward to seeing soon. But our church is not built of brick. Our church is all of us, the members.

God bless you all.

A lot has happened since my last post. I’ve participated two immunotherapy studies, one after another, and neither had the desired effect. Tomorrow, I begin some cycles of R-GemOx chemotherapy to reduce my cancer load in preparation for CAR T-Cell immunotherapy. My doctor says that this is the best way forward and I agree. Immunotherapy has been unable to put a dent in the cancer load (the volume of cancer cells in my body). Chemotherapy has rapidly shrunk my cancer before. Chemotherapy isn’t very effective at keeping the cancer away, so I’ll need immunotherapy too. Immunotherapy teaches my immune system to keep the cancer in check for the long term.

The treatments I’ve had since early December have caused significant chaos. The first treatment made me sick and listless. The second required me to spend several days in the hospital each week for a month. The coronavirus outbreak further complicated logistical matters and introduced another bogeyman to worry about. I ran out of job-protected leave, so I’ve been forced to resign from my software development job. To come away from all that without a win is disappointing.

However, I’ve experienced past success with chemotherapy. I’m confident that eventually we will prevail over this illness thanks to the help of a great many people. I pray that God’s hand continues to guide us through it all.

Other thoughts for today

I miss my mom. I miss her way of casual wisdom and insight. I miss her positive attitude even during rough times. When she cried, it was for a good reason. When she didn’t, she spoke in ways that lifted up people. She was a model of civility and love. I miss her terribly.

Most of us have special people that we miss. We honor their memory by talking about them with our kids and sharing their stories with our friends. We try to emulate their character, usually less than perfectly. The more we know about what was important to them, and the more we know about their priorities, the more we can be like them.

I share this because as we struggle through this pandemic and I through my illness, I am struck by the focus that these events cast upon what is most important in life. We should not be in a hurry to get back to our non-quarantined lives if by doing so we forget what is important and stop acting like unselfish human beings. Why do most of us tolerate isolation when we could, like self-absorbed children, moan and cry and demonstrate in the streets against it? Because we know that people that we love, and many others that we don’t even know, may be saved from suffering and death through our collective actions. We care enough to stay home most of the time, and to wear masks in public, and to not act like jerks to one another. We are demonstrating love for others. We are participating in community. We are pulling together toward a goal. We are doing something honorable and righteous. We are channeling God’s love for his children. Thus, our lives gain meaning. Will we ever again see such a time as this? What will we learn from these events? What will we carry forward and teach to our grandchildren? What will history say about us?

I know my mom would say that our inconvenience is worth it.

Be well and be happy. Take care of yourself and your loved ones. God bless you all.

 

My heart goes out to all of you – to all of us. We are in the midst of an unprecedented situation. We need to pull together to get through it.

I won’t repeat all the mantras for avoiding the Covid-19 virus. You’ve probably memorized them all by now. If not, look at excellent sources of information such as the Los Angeles Times, the New York Times, the Washington Post, and state sites like California’s covid19.ca.gov.

This pandemic will pass, but not without cost. I know many of you that have had to change some of the most ordinary and the most important behaviors of your lives. You’ve cancelled events, stayed home from work, telecommuted, gotten laid off, or missed seeing loved ones. It’s inconvenient, sometimes painful, but oh so important to protect those of us that are most vulnerable. Please remember to reach out to people that are older or that live alone to check on their welfare. And do what you can to help. Be strong by holding each other up.

As for me: I’m heading back to the hospital for another infusion today. I read in the news that the hospital has erected a large triage tent outside the ER to screen people for possible infection. I won’t be going in that side of the hospital. I’ll be entering through another way. Someone will be waiting to escort us to the wing where I’ll get the infusion. The wing is a special place, where people getting various cancer treatments and and are very vulnerable to infection are cared for and protected. It’s a very safe place for me to be.

Please be well, look out for one another, and stay in touch. Talk to you again soon.

P.S. If you’d care to share how the pandemic has affected you with other readers of this blog, please feel free to comment on this post. I’d love to hear from you.

May God bless you.

Tom

I feel, it’s hard to say what.

So many emotions, now that aches have passed

Knowing more are coming.

Fear.

A long, noisy train approaching in the dark night.

The kind of fear when I lay in my bedroom alone, a terrified boy.

Night after night, waiting for the piercing headlight

and mechanical yell of the midnight horn,

and the deep rumble-clacking of unstoppable, uncaring steel wheels

pressing hard down against the cold steel rails.

Night after night.

I pull my blanket over my head to hide from the inevitable,

wishing it would never, ever rumble and roar

past my house

ever again.

I wrote this a few nights ago after awakening from a fitful sleep. I was worried about everything in that moment. This childhood memory became clear as if it were from yesterday.

I’d been putting some distance between myself and my most recent infusion, the final infusion for the latest treatment. The symptoms caused by infused medication had been waning in my body. The strong, nagging aches in my arms and legs were finally dissipating, my stomach was settling down, and my fatigue was lessening. But soon I would begin a new treatment with unknown new symptoms. I was starting to get scared.

Tentatively scheduled to start next Sunday, I will begin a new treatment. The one I began in December 2019 was not effective. It kept the disease from spreading, but that’s about it. The amazing before-and-after PET/CT scan images I experienced during my 2018 treatment did not materialize this time around. This was disappointing and frustrating, of course. It showed that I could not expect every treatment to be a slam-dunk success. As I thought more about it, I began to worry.

My doctor assures me that there are still many avenues for treatment, and I know he’s right. I read about new treatments all the time. And if these newer, gentler, more sophisticated treatments don’t work, there’s always the option to go back to older, stronger chemotherapy that should get the job done. The down side is that I’d have to deal with the harsher side effects.

I’ve recently been rereading information about lymphoma and notes from my previous doctor visits. I am reassured that this disease is treatable and survivable. In fact, people usually survive it for years. Why am I getting so bound up about it? Well, the unknown is a scary thing.

Tomorrow I get an MRI on my head. I hope they find my brain remains in my skull and doing fine. I had a bone marrow biopsy last week. These tests are part of the opening protocol for the new study.

I’m confident in my good prognosis. It’s just a matter of time before we find the right treatment. Perhaps the third time’s a charm?

—

Thank you to all my family and friends accompanying me on this journey. Thanks for the prayers, hugs, handshakes, food, coffee, visits, best wishes, phone calls, messages, favors and love. You are the people that hold me up day to day, showing me God’s love for me through your hearts and through your hands. Blessing to you all.

“For I long to see you, so that I may impart to you some spiritual gift to strengthen you, that is, we may be mutually comforted by one another’s faith, both yours and mine.” – Romans 1:11

“One’s destination is never a place, but a new way of seeing things.” – Henry Miller

I’m not sure what to say. I’ve not been well of late, though I have had a few hours here and there of feeling alright. The worst is the fatigue. The second worst is the digestive issues. Third is the itchiness on my abdomen and knees brought on by reaction to the medication. Then there are the aches and pains. Those symptoms swirl around and around as I go through each day. How many are caused by disease and how many by treatment I cannot say. I’m recording the symptoms in a log which I share with the medical team each week. I should create a graph of how the symptoms wax and wane over time. But frankly, I’m in no mood to do so.

It sucks to be sick all the time. It saps energy and happiness from each day. It discourages and deadens. It worries and frustrates. It affects those closest to me. And that may be the very worst thing of all. I hate being the focus of worry and pain. It makes me sad.

So, I try not to complain too much. I don’t feel like I’m getting worse. Rather, I’m impatient to get better. I let my wife know how I’m feeling but I’m not inclined to dwell on the subject too much. Together, she and I look for the hopefulness in daily changes. We count our blessings each day.

God is good all the time. I feel his presence through it all. He doesn’t give us more than we can handle. He sends angels in the forms of friends and family. He shows me that beauty and love exist in every day. He demonstrates the manifest value in my relationship with him. He reinforces the idea that relationships are the foundation of life.

I’m heading back to LA tomorrow for more tests. Another infusion comes next week. I’ll stay the course and run this race, looking forward to what comes next.

Love and best wishes to you all.