Balancing Work and Health
Last week, I combed through social media in search of content ideas and stumbled across a young woman (Instagram - @frelletheshelle) who recently participated in a bone marrow transplant at the UCSF Benioff Children's Hospital. As I watched her video diary outtakes, she vulnerably expressed her fears and reservations about returning to medical school post-transplant.
The first 18 months
You see, what many people don't know is that life after transplantation is daunting.Recovery is slow and a little unpredictable. The pace of recovery is uniquely tailored to each individual. It is primarily based on age, medical history, and disease progression before transplantation.
From the patient/provider perspective, life after curative therapy can be physically demanding, mentally taxing, and emotionally draining. Like many other trial participants, I had to take an 8-month hiatus from corporate responsibilities, and advocacy/volunteer efforts to heal.
Expect the unexpected
When your phone or computer carries out a new software update, certain device functions change for the better or the worse. The introduction of new features, the appearance of widgets, and the re-arrangement of the dashboard can appear jarring at first. But in time, you slowly start to familiarize yourself with the new changes. The same analogy can be applied to the curative therapy process because transplantation changes immunology and gene editing will change the DNA.
The body goes through a series of intense medical procedures, from bone marrow aspiration to egg production stimulation and retrieval for fertility preservation. Then, there is a central line placement followed by a conditioning regimen of chemotherapy and radiation therapy to destroy the stem cells in the bone marrow. In summary, your body is put through a wringer.
Changes to the immune system after transplantation impact the whole body. For 18 months, doctors place patients on immunosuppressants (ie. Sirolimus or Mycophenolate) that reduce the strength of the immune system and decrease the risk of the body attacking transplanted cells.
In my first year of post-transplant recovery, I experienced many new symptoms. They included iron overload, high blood pressure, excessive dry mouth, insomnia, memory loss, seizures, fatigue, joint pain, swelling in extremities. I even experienced low blood counts that sometimes required clinic/emergency room visits. The unpredictability of the recovery process impacted my mental and emotional health. I needed time to understand the nuances of transplant recovery.
Working with sickle cell
As an entrepreneur, the company's success depends on my leadership. So, stepping away from work was somewhat of a difficult decision. With a type A personality, I'm not accustomed to being idle. Even during the clinical trial, I took online courses and kept an eye on industry trends. I also offered pro-bono PR consultation to advocacy groups.
As I'm sure you can guess, I love my job so I was very eager to return to work but needed to strike a balance between career and recovery. The mind-body connection is so important, so I tried to focus on developing healthy coping strategies to better manage stress. I planned to ease myself into work, starting with shorter work hours (11 am- 3 pm), 30-min client meetings, and a 3-day weekend to prioritize rest.
How to maintain a good work/life balance
Balancing the responsibilities of a full-time job alongside a chronic illness like sickle cell disease (SCD) seems impossible if you fail to plan. The first step to finding balance is to accept your diagnosis. Next, you need to respect your limitations and decide if you want to disclose your medical condition to colleagues.
My clients and staff were always aware of my ongoing battle with SCD. So, when I embarked on the transplant journey, there was appreciation and support for what I was going through. A piece of advice that I offer aspiring entrepreneurs with sickle cell is to adopt good time-management practices and embrace self-care.
Every part of my day is planned to a T: enforcing water/snack breaks, incorporating meditation/mindful breathing exercises, or turning on the 'Do-Not-Disturb' feature to get sleep; I try to make sure each day is productive.
Given the unpredictability of my recovery, I worked extra hard on days I felt significantly better to stay on top of deliverables as much as possible. This meant that on low-energy/sick days, I had ample room to rest because I wasn't behind on client work.
Chemo brain describes thinking and memory problems that a patient has before, during, or after the regimen. Every patient experiences a varying degree of memory loss, so always jot things down from daily tasks to symptoms.
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