Practical Stuff: Power Wheelchairs

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I have compromised motor skills due to an astrocytoma on my cerebellum. In December of 2015 I fell flat on my face twice in about a 15-minute succession that ended with me being dismissed from working in the office, and initiated my current chapter of treatment. Since then I’ve used rolling chairs, wheelchairs, and walkers to get around exclusively.

Eventually, I was approved for a power chair, that I had planned to use to get to the office again. Other events transpired, and in the mean time three chairs failed. I was given a loaner, that just last weekend, I seemed to have upset. I once got stranded in the park where I upset the loaner. I got home this time, but serious doubts were raised and I considered scrapping replacement plans and seeking an entirely different manufacturer. Coincidentally, the replacement chair was delivered after about two months and now it’s in my garage AKA dining room.

After the succession of 3.5 failed Pride Mobility units, I received a new one by their sister company, Quantum. I’m going to take it out for the first time and hope it will last. I’ve come to realize the positive impact that mobility has on quality of life. Like a lot of things along the cancer journey, there’s a lot to learn, and the solutions that emerge through passive acceptance usually aren’t optimal.

I have gained an appreciation for the new experience of navigating Los Angeles via the city sidewalks, some of which have serious problems. In May, I started documenting some of the challenges I encounter in my travels on a blog called LA Street Level.

The number one issue that I encounter is the absence of ramps, that results in using the streets, sometimes in hazardous, unprotected situations.

What I hope to experience with this new chair is the ability to go to somewhat more remote places—nothing crazy—but off the city streets, ideally next to or atop a hill or mountain, under some trees. One relatively accessible such destination is Kenneth Hahn State Recreation Area in Baldwin Hills. I documented my initial visit and plan to expand accessibility information. Also, I started a new photography project inspired by shinrin-yoku, the Japanese practice of forest bathing.

I feel fortunate to live in a time and place where accessibility enables being outside and exploring, despite physical limitations. I look forward to going more places and having adventures. Happy travels!

Practical Stuff: Functional Formularies for Feeding Tubes

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Following hospitalization last June, I received a feeding tube, due to neurological deficits that affected swallowing.

For about four months I was dependent on the tube for all of my food and nutrition, which has been a critical aspect of addressing health generally, and specific to my brain tumor.

I’ve been vegan for about five years.

In the hospital, and immediately following, I was given Osmolite, a common, vegetarian feeding tube formula. Aside from having soy (a controversial ingredient for cancer patients) and whey (a non-vegan compromise), the now-repackaged Osmolite came in a can and looked about as institutional as any packaged “food” can. Follow-up consultation with a nutritionist during radiation resulted in use of Soylent Powder (1.something). It is vegan, so that was a win. However, again soy is a controversial ingredient in the cancer patient’s diet. Also, Soylent is really proud of their science, but not much else. And they double-down against criticism of GMOs. They’re very pro-GMO, which isn’t in accord with my values. Even if I’d wanted to continue my subscription (currently about $216/month out-of-pocket; a clinic-distributed discount code didn’t work), there was a time when the startup wasn’t going to have inventory of the powder specifically.

Finally, through a Google Search that I should have done initially, I found Functional Formularies. Liquid Hope is a whole foods plant-based (vegan) meal replacement.  It has a boatload of optimal plant ingredients, is USDA Organic, and is covered by insurance. Following insurance approval, I received a supply that I am still working through, as I’m no longer reliant upon the G-tube to eat, but will have it for a bit yet. It’s a fast, nutritionally-complete lunch that’s already been paid for. Functional Formularies provides the necessary forms for insurance approval and facilitates communications with and the approval process with the insurer. The staff is available by phone and email, are responsive, friendly, and helpful.

I wish I would have known about Liquid Hope from the outset, which is why I want to spread the gospel.

Figuring out the dilution took a little bit. Initially, I would have two packets (about 600mL) per meal, mixed with about 300 mL of spring water. I felt a bit lethargic after lunch with that amount and concentration of food. Now I dilute the Liquid Hope 1:1 with spring water and only need one packet (about 300mL).

I truly appreciate that there’s a compassionate, high-quality product like this that checks all of the boxes without compromise.

Timing and Progression (A Positive Form)

Timing is one of those weird things that can bring a sense of cosmic order to a non-religious, spiritually-agnostic life. I have been fortunate to experience what could be called divine acts of timing. The universe has taken care of me, with sensitivity to timing. Acknowledging this, is a useful aspect of healing.

The following is a chronology of events, that in hindsight, took place just when they needed to.

Yoga pause, July 2015. I love yoga. I believe in it. It’s the first practice that made me feel connected to my body, in the moment, instead of just being a floating head, which is how I’ve always felt. I practiced yoga for about a year with a wonderful, uniquely talented, light-filled, generous yogi. The pause came about in anticipation of a trip to Aruba that my uncle invited me on. I look forward to returning to the mat when things have progressed a bit further and with the blessing of physical and occupational therapists.

Swimming pause, 2015. I paused swimming sessions (the pause is still on, but will resume when possible, I’m not a born swimmer, but it’s great exercise, especially for the core), sensing that I needed to adjust my physical recovery. That was a Tuesday, on Wednesday I fell into a tomato cage, in a community garden, and realized that my core could not enable me to push myself up on hands and knees. This event now symbolizes the end of my first era of presumed mobility. At about the same time, but not exactly due to the fall, I broke my glasses, I drove (a rental at the time) about a mile-and-a-half without them (I’m nearsighted) to Staples, to buy some tape to crudely fix my glasses. Leaving Staples, I later learned I dropped my wallet in the parking lot. I went to work. Before cancelling cards and taking the usual measures for a lost wallet, the police called to tell me that my wallet had been turned-in and I could come pick it up. I believe the man’s name was Joel. Joel left his number with the police, but my thank you call ended up in voicemail. Joel, if you’re out there, thanks again.

The next day I went to work, and fell, twice, hard, but with no injuries, within about 15 minutes. The HR Coordinator, and Corporate Counsel, after situating me comfortably on a sofa in a vacant office overlooking West LA, informed me that I’d need to go home and not return to the office without a doctor’s written approval. As it would turn out, this was a defining moment, that effectively initiated my current phase of medical care, treatment, and recovery, and the end of free-form walking, and driving. From the office, I called my friend, ex-girlfriend of 10.5 years, fellow parent of our dog (my heart), and now health advocate. She came and bailed me out, picking me up from work. From this point forward my orbit became much smaller, originating from home.

Not long after, through a referral from the neurosurgeon who performed the two surgeries I had, I went into the care of my current Neuro-Oncologist. Reacting to recent symptoms, the frequent falls, radiation and chemotherapy were discussed as near-term treatments—the opposite of the wait-and-see non plan of action that I was rather casually following via MRIs every six months with follow-up visits to a clinic at the hospital where I had the surgeries.

I indicated a desire to wait until things were financially more feasible and until I had a full year under my belt at work to qualify for California’s medical leave act. The doctor and team understood and accepted this, and were somewhat less concerned about the urgency of treatment once they saw recent MRIs indicating tumor stability. In late May of 2016, I indicated that I was ready to move forward with treatment. Surgery was planned.

Then came pneumonia. One Sunday morning, I couldn’t get out of bed. I texted “hospital” from my iPad, to my advocate. For the next week I was hospitalized. I had been scheduled for surgery the following week. As it turned out, the medical team decided that surgery was not right at that time, and that radiation and chemotherapy would commence. A few weeks later, in mid-July, 2016, I began six weeks of five-day-per-week appointments with what I called ‘The Radiation Monster.” All of this was while I was on medical leave.

Radiation ended in early August, with no distinctive side effects other than generally low energy.

At the beginning of October, my current chapter of being financially supported by disability (so grateful) and having my non-outpatient days more or less available to independent work—type design primarily and some freelance design work—began. As it has turned out, prioritizing treatment, mainly physical therapy and more recently occupational therapy, through outpatient and at-home exercise, first and foremost, have been the right way to make progress with my health. I can’t take credit for the timing, the initial work transition, which was uncomfortable for multiple months, ended up for the best.

I am, by nature, a worker, probably a workaholic in what now feels like a different life. Prioritizing health, unfortunately, often happens when something has already gone awry, as it did with me in forming a brain tumor.

I have danced, sometimes on a knife’s edge, with timing my whole life. From serious car accidents to unusual social encounters. Cosmically, so far, I have been very lucky and try not to take anything for granted, including the order in which things happen. Part of my current healing and recovery effort is to acknowledge the significance of people and events that enter life at opportune moments and to recognize the grace that surrounds me.

The Spirituality Hole

I am not religious. I wasn’t religious pre-tumor awareness, I have not become religious post-tumor awareness. Many people include me in their prayers and I am truly grateful. I characterize my spiritual status as being on a spiritual quest, meaning that I am open to spiritual experiences and practices that are compatible with my values and intuition.

Every book on healing I encounter says something to the effect that you have to believe you will heal, in addition to undertaking whatever physiological measures are a part of your protocol. This belief need is where spirituality comes in. Of the protocols I have tried, most more-or-less self-devised, a key difference between my earlier intuitive approaches, which were more natural and my current chemical/medical protocol, is a consistent spiritual essence.

It occurred to me that in trusting one modality exclusively I let go of the emotional benefits of those that had preceded, even if those modalities may not have been physiologically effective.

I am torn as to whether it is a good thing that I am so open, or a deficit that I lack a resolute spiritual identity. What I know to be true, is that regardless, spirituality has to be a part of the healing process.

Astrocytoma: Prelude and Discovery

Sometime in my early 30s I started experiencing vertigo-type symptoms. When I laid on my back, the room would briefly spin. Then I couldn’t look straight up without feeling off-balance.

Eventually, I saw the doctor, and he employed some techniques to reduce the vertigo-type symptoms. They seemed to work.

Then, ultimately, the symptoms returned to a point that their seriousness couldn’t be ignored. I was walking like what I remember my worst drunken nights were. I was shifting from side-to-side of the sidewalk in broad daylight. Then one weekend I experienced incredibly painful and debilitating headaches.

I returned to the doctor. He sent me for a CT scan. I went home, went to work the next day, and got a call from the doctor that there was an abnormal mass. The doctor advised me to come to him the next morning. I did not have health insurance. The doctor personally drove to several area hospitals to see if they would admit me. He wrote a prescription for Emergency Room admission at one hospital. I drove myself there, parked, and walked in to what would become the cancer journey.

With many loose ends dangling, I entered an exam room, to be attended to by various resident doctors. When they tested my walk, I nearly fell over. That night I entered a hospital room and met the neurosurgeon. I naïvely thought ‘they’ll do the surgery, I’ll be home in a day or two.’ I did not inform my family. I did inform my ex, who wisely informed my family. The initial surgery went fine. The surgeon removed as much of the tumor as he could. A shunt was installed to alleviate fluid buildup, should it occur.

About five days into recovery, I experienced aspirational pneumonia, and an emergency second surgery was initiated. Things weren’t looking good at some points.

About 10 days after my surgery I was transferred to Rancho Los Amigos a public rehabilitation hospital, with an excellent reputation. About another 10 days later, I went home.

I have issues with the left side of my body. My left arm and leg are weaker, my hearing is worse in my left ear, the left side of my face feels odd, something like numb. I have serious mobility issues and currently spend most of my time in a wheelchair.

With general mobility issues and an off-kilter gait I lived fairly normally for almost two -and-a-half years. I did yoga, I swam.Every six months I went for an MRI adjacent to an ambulatory clinic, where I would then see one of the volunteer oncologists, who would report that my tumor had not grown.

Months passed. I fell in private. Then one day in a community garden, I collapsed into a tomato cage. I couldn’t get myself up. I had no core strength whatsoever and wiggled on the ground for 20 minutes, finally managing to get up. Before I left the garden, I fell again. Someone helped me up. The next day I went to work and fell twice within 15 minutes. They sent me home.

I had visited the neurosurgeon a couple months prior. He wrote a very detailed letter and referred me to the UCLA Neurooncology team. After my falls,  I was seen by the neurooncologist and became a cancer patient. I gladly am under their care today.