I miss work. #fuckcancer
This year I’ve been dealing with cancer, chemotherapy, surgeries, and general illness all of which have prevented me from working and doing a lot of the things I love. Some have suggested I write about it, so here’s my story, covering the past 14 months or so.
It’s been over a year since I’ve worked full time. I miss everything about work: the people, benefits, salary, routine. But most of all, I miss the work.
A little over a year ago, I moved across the country from San Francisco to eastern Connecticut to help care for my partner’s father, who had pancreatic cancer. The move meant leaving a great job in San Francisco with challenging work and a a team I loved. But the move was the right thing to do — my partner’s father was sick and now, more than ever, he needed to be close to his family. Plus, I love the east coast, especially the cadence that comes from a clear change of seasons.
Now on the east coast, I took a break over the summer of 2014 to work on an art project and learn about toy design while contemplating my next career move. I’d been working as a product manager for several years, but my background is in design and engineering and I missed writing code everyday.
Come the fall, I had committed to the idea of getting back into engineering. Living three hours from NYC and two hours from Boston, I had hoped to find remote work as a front-end developer, occasionally traveling to either city when needed — but found there are definitely far fewer remote jobs out there than I had thought.
To help gain some experience and dive, head-first, back into engineering, I decided to apply for and was accepted to Hacker School (now called the Recurse Center — though I’ll refer to it as Hacker School in this post because that’s what it was called while I was there). I spent close to three months in NYC focused on writing code every day. I paired with other programmers, shared ideas, tackled interesting problems and projects, and attended fascinating talks on everything from prototyping applications, exploring large data sets, to coding style and machine learning. It was an invigorating program that left me even more excited to get back to engineering. At Hacker School, I learned iOS development with Swift and made a couple of apps, wrote some Twitter bots, learned about functional programming with Haskell, and started work on a creative code project which is an homage to minimalist artist, Sol Lewitt.
Unfortunately, my time at Hacker School was cut short by a couple of weeks when we learned that my partner’s father, Art, had been rushed into the hospital. We left NYC and headed back to Connecticut and spent much of the next couple of weeks at the hospital with family. After difficult conversations and lots of tests, we learned that the cancer had spread from the pancreas, punching into the stomach and there were no further treatments that made sense. So the family brought Art home and enrolled in hospice services.
The weeks that followed are a bit of a blur. I got to know my partner’s family really well, and helped where and when I could. At the end of November, a few days before Thanksgiving, Art passed away. It was hard to know what to do next. I continued to help as much as possible — a support during the wake and the funeral, around the house with chores, or just as a shoulder to cry on. I figured after the funeral and some time to adjust, I’d start my job search again, get back to routine, and the joy I find in work.
I started my job search and even landed a few interviews with companies looking for remote front-end engineers. Some interviews went well, others not as well, but I was getting my feet wet again. But I kept looking. I knew there had to be a developer role for me as someone with both both design and development chops and experience in product management. I’m a unicorn, dammit!
But throughout the fall, I hadn’t been feeling well and it turned out I had been ignoring/coping with something bad.
I’d had gastrointestinal issues for many years. My doctors always assumed it was a food allergy. When cutting out gluten seemed to reduce my symptoms, my doctor deemed it a gluten allergy and I moved on. I’d have the occasional bad day, but now it was getting worse — to point where I could hardly leave my house. In late December, I went to my see my doctor who immediately sent me to see a gastroenterologist. Certain that my problem was probably IBS (common in women my age) and not a problem with gluten, the gastroenterologist set me up for breath tests and a colonoscopy and endoscopy. An IBS diagnosis would mean lifestyle changes and ongoing management of symptoms. But at least it would mean knowing how to manage what was happening to me.
A month later, my life changed forever when I had my colonoscopy/endoscopy.
In the recovery room an hour or two after the procedure, I learned I didn’t have IBS. Instead, a large mass was found in the lower portion of my colon and I was immediately sent to see a surgeon. The surgeon told me I had cancer. I cried. In fact, I spent that entire appointment in tears and complete disbelief. Everyone kept telling me how uncommon it was for someone “my age” to be diagnosed with colon cancer. How could I have cancer? How could this be happening to me?
Less than two weeks later, I underwent surgery to have a section of my colon removed. A biopsy of the area was done to check for any spread of the cancer, but my doctors were hopeful that because of my age and a good CT scan result, that the surgery had been enough.
After several days in the hospital, I was sent home to continue recovery, hopeful that my brush with cancer was over. Recovery was slow, as I was tired and groggy from pain meds. I wanted to get back to my job search, but it has to wait. But paying for health insurance out of pocket was starting to take its toll and now medical bills were starting to arrive. I worried (and continue to worry) about money all the time.
A couple of weeks into recovery, the next blow landed. My surgeon called telling me that while the surgery had been successful, the results of the biopsy showed cancerous cells in a few lymph nodes. I was set up with an appointment with an oncologist and told that my next step was chemotherapy. Everything was happening so quickly. I felt like I’d lost all control. When I hung up the phone, I fell apart completely. I didn’t just cry, I wept.
So I met with the oncologist and learned about the type of chemotherapy I was to receive, the side effects, and what to expect over the six months of treatment. Everyone reacts to chemotherapy differently, so only time would tell what my experience would be like. I was advised not to start a job search during treatment, but to take the time to fight, stay positive, and heal.
To get ready for my first treatment, I had another surgery to have a power port installed in my upper left chest area. A power port is basically a small insertion point attached to a catheter that makes it easy to administer drugs or draw blood. The day after that outpatient surgery, I was scheduled for my first chemotherapy treatment. But I felt sick. Really sick. But my oncologist pushed for me to start treatment anyway, certain that my sick feeling was just nerves.
My particular type of chemotherapy consists of a four hour infusion at the hospital and then 46 hours of addition infusion via a pump that I carry with me. Then I go back to the hospital where they disconnect the pump and de-access my port.
At the end of the first treatment, I still felt sick. In fact, I’d stopped eating because I felt so bad. After almost a week of barely leaving my bed and hardly eating or drinking, my partner dragged me back to the hospital where they determined I had C-diff — a highly contagious infection. I ended up back in the hospital, where I was isolated and treated for several days before being sent home. I was finally eating and drinking again, and the doctors had cleared me to start my next round of chemotherapy.
But, prior to the second round of chemo, when I met with my oncologist I had increasing pain in my left arm and shoulder. In fact, I could hardly lift my left arm. I was sent to the hospital for a CT scan which revealed multiple blood clots on my left side. So I was put on blood thinners. That wasn’t so bad, but then I learned that because of the clots, they needed to remove my power port and put in a new one in order to continue treatment and not risk more problems with blood clots. So I had yet another surgery, this time to remove the first power port and install a new one, now on the right side of my chest.
After all of this, I was back on track to continue treatment, but I was slipping deeper into depression. What else was going to happen to me? And will I pay for all of this? When will I get my life back?
Jump forward to today. It’s the middle of summer, I’m not working, I’m grappling with depression, and tomorrow, I start my sixth round of chemotherapy. I have stacks of medical bills and a bank account that can’t begin cover them. Paying my health insurance is my priority month after month, which I’ve managed to do so far. But I worry about money all the time. And I’m still worried about finding work. But those around me tell me to be patient and stay positive. I promise I’m trying.
The side effects I’ve experienced from chemotherapy have really reinforced the fact that I can’t work full time during treatment. I did some volunteer work for a non-profit working with React JS for a while and worked on some personal prototyping exercises to learn Angular, but I couldn’t keep that up. I’ve worked through some online courses in iOS development too. But I’ve developed neuropathy in my hands and feet. At times, my hands are so shaky or tight that it’s difficult for me to type or hold a pencil. I still have my hair, but it’s thinning rapidly. I have cold sensitivity, which means I can’t drink cold drinks or eat really cold food. If I get cold, my hands and feet become painful and numb (strong pins and needles sensations accompany that). I even need to wear gloves to do things like pick up my iPhone or touch a cool countertop or hand rail.
My doctor says the effects of chemotherapy are cumulative. And I definitely feel more fatigued with each round of treatment. I’m also struggling with depression. That side effect is the most difficult to deal with because it affects everyone around you. I feel a profound sense of sadness and I have little interest or energy to do much. I feel a lot of guilt for how this affects my partner and my family — emotionally, financially, etc. So I’m on all sorts of meds to help manage and treat these side effects. And I break up my day into dosages.
So, that’s my story. 2015 has basically been the worst year of my life and I’ll be glad when it’s over. I miss having things to do and responsibilities in a job and being a part of a team. I’ve spent my life defining who I am based on my work. And I didn’t mind that because I’ve love my work. It drives me. But without it, I feel like I’ve lost my identity. Every day, I feel like I’m just killing time — to the end of the day, to the next treatment, to the end of treatment, etc. I’m worried about my future — my health, my family, my work, my finances. I’m doing my best to stay positive and be the fighter I’m told I need to be. I have good days and bad.
Tomorrow I start treatment 6 of 12, and by mid-October, I hope to be through with treatment and back to looking for work. Back to work and back to a happier, cancer-free, me.
Wish me luck.
