How I kept calm and carried on when we discovered my husband had Cancer

Tina Schweiger
8 min readOct 31, 2018

On Tuesday, September 25, my husband Richard was diagnosed with Cancer. I was sitting in my office, getting ready for my Academic Writing class at Harvard, scheduled to start at 4:30 pm. My 3-year-old son Sky was sitting in my lap while I was trying to finish up the last bits of work before class. Richard walked in at 4:20 and said, “Oh good, you’re sitting down” in a matter of fact sort of tone. He continued “The doctor called. He said I have Non-hodgkins lymphoma.” I think Richard talked a little about the doctor’s delivery of the news and said something about winning the lottery but I heard cancer.

“You have cancer.” I said flatly and looked at him. He said yes and all I could feel was shock. I really didn’t know what to do, but I knew I was prepared for my class and I had 6 or 7 minutes until I had to be present on a video call. Missing class isn’t an option so I dialed into my class on Zoom, sat there, and watched as the class unfolded. A good, resilient, well-trained 20% of my brain was doing well at paying attention. I was prepared after all and the other 80% simply kept replaying those 4 minutes of conversation over and over, letting the tendrils of related thought spill into one another.

Don’t Google it !

If you are ever diagnosed with Mantle Cell Lymphoma, don’t Google it. One of the first results you’ll find is on medicinenenet.com and it is terrible news. It says treatment fails in less than 18 months and the median survival time is 2–5 years, with only 5% to 10% of individuals surviving for 10 years.

This is terrifying news, and the first thing I thought about is our two boys, only 3 and 6 years old, wondering if their dad will see them graduate from high school or worse, I would be a widow in just a few years. Physically I felt a dark tightness park itself right in my heart center, radiating fear.

Fear is a Great Motivator to Action

We contacted every resource we could find, looking for connections into MD Anderson so my husband could get the best treatment possible. Within 2 days, Richard emailed Dr. Michael Wang, the foremost researcher and doctor for Mantle Cell Lymphoma. With a simple email directly to Dr. Wang, Richard got an appointment less than one week following his diagnosis.

Dr. Michael Wang, MD.

Dr. Wang is a Professor in the Lymphoma department at MD Anderson in Houston. He is mainly a clinical investigator, with a laboratory space housing more than ten investigators. He co-leads the B Cell Mantle Cell Lymphoma research and his goal is to double the cure rate from 30% to 60% over a very short period of time.

In a video interview with PatientPower, Dr. Wang expresses his life mission, which is a passionate desire to cure Mantle Cell Lymphoma. His aim is to find a shortcut to a cure, and his current research points in that direction. One of the most notable qualities, evident in the video interview and in our interactions with him, is his openness and accessibility. He implores patients to reach out, to email him, and says that he never says no when a Mantle Cell Lymphoma patient reaches out and wants to see him.

His passion shines through with his words and expressions, and his positive attitude is infectious. On his Twitter page, he publishes his direct email address in Tweets, inviting people who’ve been diagnosed with Mantle Cell Lymphoma to contact him. His direct phone number is readily available with a Google search. It’s clear, even in his Tweets, that he wants to cure every person who gets diagnosed with Mantle Cell Lymphoma.

He is leading research funded by the Moonshot Program, an Act passed by Congress in 2016 that authorizes $1.8 billion in funding for research to cure cancer over 7 years. He’s published 47 Research Items on the subject.

Dr. Wang leads a project at MD Anderson Cancer Center in Houston called Windows 1. This is part of an international trial with 40 hospitals across 10 countries and three continents utilizing a newly FDA approved drug called Acalabrutinib. On October 31, 2017, it was approved by FDA.

Dr. Wang highlights how much easier this therapy is for patients. They can wake up in the morning, take a pill, and most importantly, not go to a hospital. There’s no hair loss and patients do not experience much fatigue. So far, they’ve found that MCL cancer shrank 81% of the time.

The Windows 1 trial is scheduled to last until 2021, and as the name implies, we learned there is also going to be a Windows 2 trial which begins in early 2019.

When we met with Dr. Wang on October 15, we found out Richard is an ideal candidate for the Windows 2 trial. In December, they will re-run his tests, and then treatment will begin when Windows 2 starts, which we’ve been told is in January.

Dr. Wang was thorough in letting us know legacy treatment involves heavy chemotherapy and stem cell replacement therapy. While it works, it is very toxic to the body and only extends lifespan on average 10 years which is completely unacceptable for my 45-year-old Richard.

Dr. Wang’s Research and Progress in Treating Mantle Cell Lymphoma

Dr. Wang co-authored an article in the Journal of Hematology and Oncology called “Current trials for frontline therapy of Mantle Cell Lymphoma” (Steiner, Romaguera, & Wang, 2018). The Abstract of this article states that because of a greater understanding of the biology of the disease combined with the development of new, less toxic, drugs, that the prognosis of those diagnosed with Mantle Cell Lymphoma is expected to improve dramatically. The review published includes an extensive overview of current trials for Mantle Cell Lymphoma and shares the results of these new treatments.

Background

The article provides context about the disease Mantle Cell Lymphoma. Notably, Mantle Cell Lymphoma represents only 2.8% of all non-Hodgkins lymphoma, and the incidence rate in men is twice that of women. On average, a person is 68 years old before they are diagnosed with MCL.

They describe a few different subtypes of lymphoma, including Classical what Richard was diagnosed with”, leukemic non-nodal Mantle Cell Lymphoma, and other abnormal types that can lead to a very aggressive progression of the disease.

The background then describes that most people with the disease receive a treatment combining aggressive chemotherapy followed by a stem cell transplant. This treatment results in a median survival of 12.7 years, but is likely to result in acute toxic deaths and spawn secondary tumors — ~10% solid tumors, 3–6% leukemia. If the patient is old or frail, they may just decide not to treat at all because the treatment may be too much for the elderly patient to bear.

The purpose of this review is to highlight non-standard and new therapies currently being tested. The article covers ongoing trials, trials in the recruitment stage, and completed trials, but not published trials.

Methodology

To access information on trials, the team searched clinicaltrials.gov between 2000–2018. The article then presents these as tables, listing the institution, physician, regimen, phase, dates, and the age group of the participants.

Results

The authors present three tables of clinical trials, along with a narrative description in three different sections. The first is clinical trials for patients older than 65 years, the next is for those younger than 65 years, and the final is for trials that are for all patients over 18 years. Through reading the narrative descriptions of the clinical trials, one can interpret a few different themes.

• Legacy treatments included intensive, toxic chemotherapy combined with a stem cell transplant. Included in this collection of studies are trials that test different combinations of drugs prior to a stem cell transplant. This intensive treatment has typically been reserved for those under 65 years of age.

• Novel treatments are being tested in trials for younger patients that either do or do not include a stem cell transplant. For younger patients, 5 studies are covered, and two include stem cell transplant while three do not.

• Within the younger age group, the authors offer a detailed description of the outcome of their trial, the Window 1 study. The article highlights the unique, chemotherapy-free approach that attempts to reduce toxicity (see background — risk of toxic deaths within a decade). The therapy is easier on the patient, and has achieved unprecedented results, with 20% of the patients achieving a partial response and 80% achieving a complete remission.

Because the article was authored by doctors from MD Anderson, it highlights their results, or preliminary results, and more details about tolerance on its own studies. A few of the studies covered describe some preliminary results, and most just indicate when the trial is to be completed without any preliminary results.

Future Directions and Conclusions

Because of the varied inclusion of outcome data from studies, I feel like the article is really intended to be a pre-publishing of MD Anderson study results under the guise of an article that highlights non-standard and new therapies. The future direction and conclusion sections reiterate the importance of continuing studies that focus on immune therapies that are non-toxic, easier on the patient, and are producing results that could be a shortcut to a cure to Mantle Cell Lymphoma.

Interestingly, the authors also highlight a problem in the clinical trial system, which is currently a drug-centric approach, versus what they recommend as a better approach: a patient-centric approach that individualizes drug combinations based on the patient’s specific genetic makeup. It appears that MD Anderson authors are setting up a peek into upcoming studies that will be conducted in a different way: one that is driven by genomic and molecular profiling of patients with customized therapies.

The Illumination of Knowledge

Back to the academic writing class I was getting ready to join when Richard broke the news. At this time, I’m enrolled at Harvard Extension School, working toward a Master’s Degree in Psychology. Part of my education is a deep dive into academic writing, statistics, and really learning how the scientific community conducts studies and publishes results.

Prior to these classes, I would have opened up Dr. Wang’s study and probably glossed over it, searching for meaningful sentences amid the sea of unpronounceable drug names and incomprehensible statistics. Little did I know when I enrolled in this program that this education would help me make sense of scientific research, understand how to read and interpret it, and translate it into plain language that can be shared and understood by a non-academic audience.

As a realist, understanding as much as I possibly can about Richard’s situation is my goal. After discovering Dr. Wang, I’m inspired by his passion and feel unbelievably grateful to have Richard under his care. The fear I felt after Googling Mantle Cell Lymphoma has been replaced with optimism, and even a hope that Richard will be the patient that gets Dr. Wang to his goal of curing Mantle Cell Lymphoma.

Reference

Steiner, R. E., Romaguera, J., & Wang, M. (2018). Current Trials for Frontline Therapy of Mantle Cell Lymphoma. Journal of Hematology & Oncology, 11. https://doi.org/10.1186/s13045-018-0556-x

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Tina Schweiger

Technology Designer and Innovator, #FeelingsMatter podcast