This is written during the 2020 COVID-19 pandemic.
I have CLL, a morbidity. I began a Phase 3 trial involving Ibrutinib, Obinutuzumab, and Venetoclax in September 2019. As a 70.5-year-old, I have an immune system degraded from when I was younger.
I am an active, engaged person. I had a terrific (but normal) February 2020. Then the COVID-19 pandemic arrived. For sure, I want to get back to my February life ASAP.
As discussions regarding personal freedoms begin to occur, it is reasonable to question how to ask how this impacts my spouse and I. Currently, the broad selection arrow is pointing toward such events as Ohio declaring “Phase 3 conditions” and “availability of a COVID-19 vaccine” and therapies acceptable to CLL patients. This is really (personally) a depressing thought.
One artifact of being 70.5 is the significance of a year to eighteen months of time. There is noticeable superior vitality to a year of life – lived now than one later. Hence, time hunkered down at home, is life lost; which is why 12 – 18 months more of this quarantining in place is so meaningful, stressful. This reality is the other dimension of patient care.
I also know I am not alone. I have a caregiver who is just as bright as me, but very different from me in the way we process information, in some ways my opposite. We are in this situation together. I am an ENTJ personality type; she an ISTJ. I talk to think; she thinks to talk. I am a trained engineer; she is a trained scientist. I am right brain dominant; she is left brain dominant. I see the glass half full; she half empty. She recharges her personal energy with quiet time; I energize by being with people. Our marital team decisions generally reflect a bias toward the one of us most emotionally impacted by the situation.
I also know how I feel, which is terrific; really, really good! Strong. My hand-eye coordination with one of the many racket sports I like to play is pretty good, some would say great. My piano play remains strong, sharp. I had a bout of flu-like symptoms for eight days in late Feb’20. There were a couple of uncomfortable days, a week of regaining strength, but not a big deal. As a quick, klutzy sort of person I can absent-mindedly (with quick movement) cut corners too sharply, letting a flying arm bang a doorknob (for example). The observation is that I get the occasional bruise or endure small cuts, certainly while shaving. Everything seems to heal or stop bleeding in a straight-forward time scale, not perceptibly different from several years ago. The thought occurs within me that my degraded immune system seems to be working OK! So, is it?
This isolation in place is harming my spouse and me. She is almost terrified at the thought from line-of-sight contact with fellow humans, neighbors, sensing danger for me. Hence, we venture out cautiously and only when necessary. (The mail does not get picked up every day, etc.)
It has been twelve weeks now. I know my body is weaker than before. Though I complete my daily yoga workout 5-6 days each week, rally table tennis 4-5 days each week, and play the piano 1.0 – 1.5 hours most days, I can feel myself losing stamina.
It’s the missing steps; steps from outdoor walking, steps from pickleball or paddleball, and would soon be tennis, yardwork, normal shopping. This movement is not occurring. The pedometer does not lie! What used to be 8,000 – 10,000 steps per day, is now 2,000 – 4,000 steps, sometimes less. I need February 2020 back.
My lung capacity, perhaps from the yoga breathing, is better than it has ever been in recent memory. I am overweight, but I do not think obese. (Actually, I have lost 8 – 10 pounds, principally from eating right!) I have never had asthma-type issues. I have never smoked. I do not think I have diabetes. I have never had a heart issue. I have every inoculation suggested. All of this matters, doesn’t it?
So, given my CLL diagnosis and recognizing I am currently in active treatment, am I really at risk comparable to those who are now struggling with the COVID-19 infection? (Persons who have the comorbidities of extreme overweight, diabetes, and constant difficulty breathing.) Are we both in the same ‘at-risk’ group? Is our current imposed isolation appropriate? (It is certainly conservative and hence, in one perspective, working.)
My spouse and I watch webinars from the LLS and CLL Society. I have had several meaningful dialogues with my CLL medical team. The messaging is amazingly consistent, and conservative. I am a senior with at-risk factors. Be quiet and stay isolated. And, we are doing that.
It is worth asking the above question. My spouse and I presume the answer, is ‘yes’. (Recall the glass is half empty.) Is there no more granular approach to answer this COVID-19 vulnerability assessment / characterization? (I’m thinking of a medical version of a ‘credit score.’ Newborns get Apgar scores.) If yes, then I need the medical community to formally provide me the guidance and leadership. Provide a characterization / score that both members of a CLL patient’s team can accept. (I know my personal conduct will defer to my more conservative spouse.) Hence, if I am in ‘that group’ – that such extreme caution is just something I need to accept, then that’s it.
It occurs to me, the large numbers of COVID-19 cases is a superb opportunity to perform data analytics to answer the above. (I am sure there is an ample quantity of CLL patients within the COVID-19 population.)
Meanwhile, I miss singing in the choir (probably not coming back for a while), interacting with our three children and sixteen grandchildren; one born on April 6th who we have yet to see in person. The following list defines who I am, what I consider normal. It is provided to stimulate consideration toward formulating an ‘At-Risk’ scoring algorithm and getting my Feb’20 back. When, can I (while wearing a mask):
- Walk outdoors within my neighborhood or at a nearby park tolerating the passing of the occasional jogger or fellow walker?
- Engage in casual bike riding among the many miles of paths in our neighborhood.
- Play outdoor tennis singles with my spouse? (Maybe no mask?)
- Play outdoor pickleball singles with my spouse?
- Play outdoor pickleball doubles with my neighbors? (Maybe no mask?)
- Play outdoor tennis doubles or paddle ball with my neighbors? (Maybe no mask?)
- Visit my children’s family – when they are symptom free; outdoor only, indoor?
- Have a casual outdoor lunch / dinner with my spouse?
- Have a casual outdoor coffee / lunch / dinner with a couple of friends?
- Cut the grass?
- Trim the shrubbery?
- Go to the automated car wash?
- Pick up orders at CVS? (pick-up window)
- Pick up a take-out food order; eat same? (I’m thinking pizza.)
- Attend Mass; sitting within the balcony? (Huge social distancing.)
- Visit our son and family in Gahanna, OH (3 miles from our home, new grandchild.)?
- Resume singing with the church choir?
- Re-engage my functional strength and yoga groups at the club – when it reopens?
- Toss football with my son?
- Get a haircut?
- Host a family visit within our home?
- Visit our sisters in Western PA?
- Visit our daughter and family in Cincinnati?
- Visit our son and family in SE Maryland?
The objective of the above listing is to functionally define what normal means to me and my spouse. Normal activity provides mental health, reduced anxiety, reduced stress, more steps, etc.
In conclusion, it is not hard to imagine that such predecessor events as Ohio’s Phase 3 and COVID-19 vaccine availability is 18 months away. I’ve learned we all need to be conscious of the incremental risks we accept to participate. This past February 2020 was fairly normal. I did most of the above activities, even as my CLL Phase 3 clinical trial was in its 6th month. There were risks I did not think about, such as contracting the season’s flu virus. Perhaps there is a way to add more precision to this category amorphously referred to as ‘Seniors at Risk?’
If the answer is yes, then what of the above activities, and when could my spouse and I anticipate being cleared to participate? Is there a structure, medically supported methodology that could provide this guidance? (Thereby putting more strength to the classic ‘doctor’s orders.’)
My father-in-law impressed upon me the three phases of retired life: Active, Moderate, and Passive. From Donna’s dad, I learned to cherish / embrace the challenge within each phase, and to hang within the earlier phases as long as possible. I think this view / feeling may be a common one amongst us CLL’ers. (Typical age at CLL diagnosis is 71.) We do need to abide with what is prudent. However, we should not graciously (or fearfully) accept constraints before needed. Greater granularity could help some of us.
The irony is that CLL patients and folks in general, when more active, are more capable of resisting the medical challenges of such problems as COVID-19 or the flu.
Visualize a set of questions, measurements that when completed and tabulated, provides a framework to facilitate a CLL individual (and caregiver) accepting appropriate risks to lead a healthier life. (I would just like to get back to a healthy portion of last my February’20 life!)
John Bush was diagnosed with CLL in September 2018. During the months leading up to that, his TWC count was about 2 times above the upper normal range. In the summer of 2019, the lymph nodes around his head were flaming, and he was bruising too easily; his body indicated it was moving out of Stage 0. Luckily, his CLL doctor was terrific and she apprised him of the clinical trial options, while assuring there were good non-trial treatments. After a concentrated effort to identify and assess options, he elected to participate in a Phase 3 clinical trial and was selected for a 3-drug combo, the first of which was obinutuzumab. These targeted drugs are amazing, and he hasn’t felt this good in 3-5 years. He is scheduled to complete venetoclax in October 2020 and finish the ibrutinib in March 2021. John has tremendous confidence with his OSU James CLL team. He feels blessed to have contracted CLL when he did.
John is currently 70.5 years old. His training was built upon a BS Aerospace Engineering, MS Mechanical Engineering, and MS Operations Management. His career included time within the aerospace industry, managing a R&D and QA department within a medical device manufacturer, and concluding with a leading contract research organization. John’s wife completed her undergraduate studies with three majors: Microbiology, Chemistry, and Science Education. She held an MS in Education, was a National Board-Certified teacher, and a State of Ohio certified Lead Teacher. She retired as an AP Bio and Chemistry high school teacher. It is with humor to remember the questions we provided to our CLL team.
John and his wife raised three trophy kids (immensely proud), who have provided them with (now) 16 grandchildren. Being with their grandkids is a big part of what they yearn to get back to.
Originally published in The CLL Society Tribune Q2 2020.