Midway through the Recovery Journey

Major surgery packs a wallop. Those who have major surgery have a challenging recovery journey to embrace.  Twelve hours under in the OR, a direct intrusion into my frontal cortex, narcotic and other heavy-duty meds, and days in the hospital wiped out my already-depleted reserves. Now I am midway through this process and sharing what I have noticed and the strategies I am trying so far.

The First 10 Days Post-Op: I do not remember my neurosurgery. I remember pre-op and then nothing until the following day when I became aware that I was in a neuro-ICU room. My memories of my four days in the hospital and the week following are like snapshots rather than continuous video. Conscious attention to the healing process was impossible because I was pretty checked out. However, our bodies are excellent at prioritizing where to spend our energy without conscious control. And they prioritize survival and healing above all else. My family and care team watched over me. Still, it was my body directing all my energy towards healing from the controlled trauma that is surgery and recovering from the intrusion of having a couple of brain tumors removed.

Admitted to the hospital for an inpatient stay after surgery, it felt like I had regressed to infancy. I was profoundly uncomfortable, given medications on a strict schedule that knocked me out, and doing seemingly endless neurofunctional tests (open your eyes, follow my finger, stick out your tongue, smile, hold your arms up like you are holding a pizza box). I needed help for every little thing. Standing. Getting into a chair. Ordering and eating food. Visiting the restroom. Being cared for with little influence/control over what was happening to me. Sleeping fitfully, but as much as I could. My body insisting that I put every bit of energy into recovery. Rest. Eat. Sleep. That is all that I was up for. My sense of time was unreliable. Milestones were medication deliveries. I think my body appreciated that my brain was mostly offline so it could focus my energy on the cellular-level repair work. I do not know that I had ever thought about the reality that our bodies do so much maintenance and repair without conscious thought.

I don’t remember when they moved me from the Neuro-ICU to the Neuro-Stepdown unit. Just that one lucid moment, I was in a room with a toilet in the corner, and the next, I was in a room with an adjoining bathroom. My family visited me every day, constantly looking for any worrisome signs of problems (none spotted!). The nurses and nurse techs were unfailingly supportive, friendly, and smiling. The doctors and therapists regularly visited to assess my progress – and on Day 3 post-surgery, they sent me home to recuperate in familiar surroundings.

Once home, I focused on trying to control pain with drugs that knocked me out. Sleep remained elusive because I was struggling with pain control, and my post-surgical brain was still swollen and damaged from surgery. Rest. Move a bit. Sit up. Rest. Move a bit. I was not allowed to be left alone until after staple removal, yet a part of me felt lonely, in pain, and yet unable to rest as recommended. Ten days post-surgery, I went back to the clinic for a checkup and to have 50 staples removed from my scalp.

Two to Six Weeks Post-OP: I am now nearly six weeks into my recovery after surgery on May 10, 2022, in the middle of a challenging process that will likely last a while. How many months and in what areas the challenges persist is to be determined. In many ways, that uncertainty is the crux of the challenge of the recovery journey. The process and milestones are both unknown and individual. So, while I am in the middle of the process and certainly still learning myself, I thought it might be worthwhile to capture my mid-stream reflections that may help others who end up walking a similar road. At this point, it seems to me that the challenges and strategies to respond to them fall into four major buckets:

Physical

• Long-term pain is challenging. In hindsight, we can see that I was having increasingly severe headaches from my brain tumors for at least eight months before surgery. Now nearly six weeks post-surgery, I am still managing daily headaches with ibuprofen at night only as part of my surgical recovery. The chronic pain has gone on so long that it has become my new normal. Sometimes I wonder if I will ever feel good again? Do I even remember what good feels like? That is when it helps to talk to friends who have undergone major surgery and recovered. They can help give me perspective from jumps further down the recovery road I am walking. There is hope, even as I wonder how long?
• Even though my surgery was in my brain, being out of my usual physical fitness routine even for a few weeks meant I deconditioned rapidly. My surgical team encouraged me to be active, specifically to walk as much as I felt like I could. I started with small steps, walking briefly around the house, graduating to walking to the end of the driveway, and eventually walking the neighborhood. To soothe my goal-oriented personality, I used daily goals and Fitbit tracking to help me feel a sense of measurable accomplishment as I went from bones that felt like water balloons to gradually increasing pace, distance, and strength. I dream of feeling physically strong again someday, but in the meantime, I can see the progress I am making.

Mental

• Figuring out my limits is a seemingly endless game of trial and error as my condition evolves daily. I know now that I am quite sensitive to visual, light, and sound stimuli. Too much problem-solving quickly depletes my capacity since that was the part of my brain that was operated on. Sunglasses, sleep masks, and limiting my exposure to screens of all kinds and complex situations like being in loud, busy, or complex people environments is essential. When I have gone too far, my headaches flare, and let me know. I don’t particularly appreciate being limited and am always tempted to push the edges. Experienced others constantly remind me to be patient and prioritize recovery, but I am finding that hard. I am thankful for my “guardrails,” who encourage me to take regular breaks.
• As my healing progresses and my need for pain medications decreases, I have a gradually-increasing capacity. A persistent challenge is to make good prioritization decisions about how to apply that limited capacity in the most impactful way while not risking a setback. I am trying to keep my focus on the big picture goal of recovering as rapidly as possible by resting enough rather than blowing through my moving target limits. I feel guilty about the impact of my recovery on those who have taken on responsibility for accomplishing what I cannot, knowing how hard they are working to fill in for my absence. I have four people who are helping me monitor my progress, assess how I am doing, and help me decide what is worth using some of that capacity and what can remain in the hands of someone else for the time being. Emerging and re-engaging is and will be a gradual process – and it must be that way no matter how much I wish we could jump ahead and skip these too-slow-feeling steps.

Emotional

• My surgery disrupted all my usual patterns. Things I enjoyed like interacting with people I care about, solving problems in creative ways, building our startup, exercising, and entertainment were all unavailable. It has felt like I am floating in a too-empty space. It helped that flowers, plants, cards, texts, emails, flowers, and blogpost comments arrived to brighten my days by reminding me that many people were thinking of me and cheering me on. It feels good to be remembered.
• One of the great struggles of this recovery journey has been the loss of things that I love. I love my work but have only recently been able to begin to re-engage a bit in helping Fifth Eye succeed. We planned a vacation for this summer, but now we have abandoned that plan because there is too much uncertainty about how I will feel in another six weeks. I love riding my horse most days, but for now, my trainer and my friend are taking care of him until I recover enough to climb back into the saddle. I enjoy reading, writing, and movies, yet all are scaled way back because those activities demand more from me now than I can manage at this stage in recovery. There are days when I feel very discouraged and depressed as I miss these things. That is when my close friends and family step in to remind me that, in all probability, I will get better, and these favorite things will return to my life. They remind me there is hope – and counsel patience. I am especially thankful for those friends who have walked their journeys in recovering from major surgeries and even neurosurgeries and shared their stories, experiences, and coping mechanisms. It is good to have those around us who can encourage and support us. I certainly need it!

Spiritual

• Two of my pastors came over the night before surgery to support and encourage my entire family and me. It was a special time as we all shared what we were feeling about this unexpected event in our lives. As we closed the time in prayer and I headed off to do last-minute surgery prep, I felt profound peace and a sense of secure closure as I walked into the unknown. As my recovery journey has continued, notes of encouragement from other believers have buoyed my awareness of a supportive spiritual community around me.
• As the weeks pass and progress sometimes feels slow, I find myself coping with the “what if” moments as I wonder if I will ever be fully restored. My strategy has been to lean into my trust in God. When worries arise, I work to find a way to hand those scary possible scenarios back to God, trusting that He knows the plans He has for me. I can trust Him that no matter what my limitations are, He has good plans for how I can contribute, even if I am walking down a curving path through the fog to see my future.
• Knowing that many are praying for me is a profound comfort.

Recovery sometimes seems so gradual that it feels hard to see progress. I need external benchmarks. My Fitbit tracks my activity over time. My Oura ring tracks my sleep quality over time. My calendar tracks the volume of work I am starting to do. My family and close colleagues follow my energy, areas of complaint (my hearing is improving…my ability to concentrate and focus is getting better week by week…my capacity to engage in increasingly complex problem-solving, carry on more nuanced conversations, cope with higher amounts of stimuli in my environment, my ability to drive a car by myself) and help me recognize progress. Someone shared an analogy with me: it is hard to see the changing height of our children as they grow because it happens so gradually that we do not see the change day-to-day. However, if you are an aunt or an uncle and only see your nieces and nephews after months have passed, you exclaim, “Oh my, how you have grown!” I need my aunts and uncles to help me see the progress. And, so far, my progress towards returning to a healthy place in just six weeks is pretty amazing as I am now beginning to re-engage with work and my metrics make clear that I am absolutely getting better each and every week! Onward!

For other posts related to my neurosurgery, click on the “Neurosurgery” category on my blogpost site at www.StartupCEOReflections.com.