#workingwithCancer - My story with Cancer

#workingwithCancer - My story with Cancer

I got the news during my early teen years in 2007. That lump near the back of my ear wasn't an ordinary benign cyst or something - it was a rare cancer called Adenoid Cystic Carcinoma (ACC). Never in my mind had I thought I would come across cancer. Early in life, you usually learn about the "family" diseases that go around in your family. For us, it was the "high blood pressure, diabetes", and other "normal" afflictions you would hear about in typical families. To come across cancer, especially one that is uniquely rare and has no known occurrence factor (meaning we still do not know what causes it - not linked to genetics or family, nor smoking, nor gender, nor known defects) was actually interesting to me - rather than terrifying. I also attribute my young age to being more head forward into this "battle" rather than being scared or afraid.

I lived in the San Fransico Bay Area, home to the foremost leading research institutions, and when it came to this type of cancer, there were actually quite a few "known experts" who had been studying the disease (for a rare cancer, it affects about 1K folks in the U.S, so there are bound to be some studies on it). I was fortunate enough to land at the hands of Stanford's world-renowned researchers and team of doctors at the Childrens Hospital at Stanford. Suddenly the world of cancer patients was thrust upon me, going in for constant CT/MRI scans to stage and locate the cancer - and get ready for a major surgery to eliminate it. I was regularly poked for blood draws, and other types of liquid medication/contrast for the many exams I had to go through. Still - at that age I was feeling upbeat - with my high school years just ramping up for me - I was more concerned about what I missed during my classes, or what activity we had planned for the High School band I was a part of - and clubs I had joined earlier - these exams and surgeries were just an "eh" part of my new normal. Then the moment arrived. They had done all of the exams they wanted - and staged the tumor in my body to its exact location and dimensions. It was time to get that sucker out. It was located on my right parotid gland and was wrapped around one of my facial nerves - so they had to come up with a clever way of cutting that part out, and re-graphing a nerve from my foot/leg that worked similar to the facial nerve. "Fascinating" I thought - especially when they even said, "you could also go through plastic surgery if you want to make you look as normal as possible." To which I shrugged off "nah, that Hollywood stuff isn't for me". I got ready in the Childrens Hospital, early in the morning to have my big surgery - my family and loved ones around me before I was laid on the table and told to count backwards during the anesthesia. Lights out.

I woke up in pain. My right arm was howling with pain, and I had all of these wires connected to me in the recovery room - which would be my home for the next couple of weeks. I discovered later on that because of the positioning and small table I was on during the surgery, my right arm was sort of positioned bent behind my back for hours on end - with the complicated surgery taking almost 12-15 hours. My care team was sorry I had to go through that - but it cost me several months of physical therapy to get anywhere back to normal - the first of the real struggles I would come to know as a cancer patient and survivor at the time. I had to learn how to walk steady again and get rid of the fatigue and adjustments my body had gone through. During my recovery, I spent time trying to re-connect with what was going on at school and contemplating my whole career path because of the affliction I had just gotten through. The head surgeon assigned to my care team also happened to be a professor at Stanford University and encouraged me to check out one of his lectures on Cancer and Biology, plus gave me access to a ton of research material. I decided to explore more and eventually made the decision to switch my college path, based on these weeks spent in the hospital and exposed to what I had just gone through. On my return home, I slowly adjusted back into life - having a face that now looked a little weird due to a mass of tissue just gone from the right side of my face - making it look much thinner and firmer than my left. Talking was weird and being a musician and part of the symphonic band at school - playing my instruments (flute, trumpet, baritone) was almost impossible - so my music director relegated me to play percussion for our performances and marching band during my month's long recovery and adjustment. I began a regimen of radiation at the site of the now gone tumor, to ensure that if the surgeons had missed any cancerous cells, the radiation would kill them and prevent future spread throughout the body. That radiation burned my skin, caused some hair loss in the back, and made it difficult to eat - chew, and caused dental problems for me - just the regular list of items cancer patients that deal with radiation have to also go through. I then had to get regular CT scans and yearly MRI scans to ensure the cancer was really gone. All was well - until it wasn't.

In the year of 2009, a reoccurrence of the cancer had come up - one tiny spot in the liver. Doing more scans, my care team ensured me that it wasn't anywhere else, and that curative surgery was the way to go in dealing with this spot. I went through another complex surgery to remove part of my liver - which was ok in terms of organ function preservation. No radiation or other methods were required at that time. Phew - I thought I was done - cancer gone! The thing with ACC, is that's only a 50 percent truth. 50 percent of ACC patients are cancer free after their initial surgery to remove the primary cancer - and 50 percent experience reoccurrence - like I did. I went along after 2009, living my life as best I could and eventually graduating high school and moving towards my goal as a Biotech/Biochem/BioEngineering major at UC Davis. Throughout this time my monthly and yearly scans reduced to yearly and then occasional scans in terms of checking on this disease. I would have to be followed by a care team for my entire life - as this rare cancer has no official guidelines on how it goes - or can reoccur later in life. My insurance fell off for a period of time while I was still on my family insurance, and then in the middle of college, I enrolled my self onto a plan through the UC Health system. I resumed my scans at Stanford, and then came the dreaded words I did not want to hear. "Umayr, we need to discuss your latest scans, as we see some glass halo markings around your pleura (lung area)".

It was another reoccurrence (metastatic spread due to it being a location other than the primary tumor site). Throughout my time in college, I had immersed myself in several labs as an intern, then a paid undergraduate researcher, while maintaining my musical habits, and getting a job on the side to pay for my tuition and needs. I remember after my appointment at Stanford where the news came back to me - I went back to Davis, sat in my car, and for the first time in a while - I cried. I tend to a more stoic face in public and get sad and cry over normal things like people tend to do in private. But I remembered all of my doctors, oncologists, and articles I read about ACC and thought I was just done with it. To me, metastatic spread (and mine which had several spots, not just one) meant that my battle just became something that maybe won't be manageable for me - either health wise or just physically. Then for a moment, I put that all aside and remembered that I love the work that I was doing - I wanted to continue and I wouldn't let the uncertainty of a rare cancer stop me or even slow me down. I could manage, and hopefully with the knowledge that I possess - maybe even help my own troubles with this disease. CT Scans and MRI's became regular and routine again - to track the progress and speed of my cancer spread. Because no therapies were approved or available at the time, "watchful waiting" is the course of action. ACC is a slow growing but relentless cancer - in which many cases grow so slow, the spread of cancer does not even bother the patient (also known as the patient is not symptomatic). I also seemed to be experiencing that - where I knew there were additional tumors in my lung area, but they weren't bothering me - as of now. I went on to win some research awards, have the time of my life in University, and graduate with a degree in one hand, and a job at Microsoft in the other.

I remember visiting my cousins house in 2017, after joining Microsoft - I took some time off in the warmer months and went down there. One day I remember feeling tight in the stomach and experienced a really difficult period and short burst of intense pain on my right side of the stomach. I called my doctor, attributed it to something else and took some pain medication - to which it calmed down and did not happen again. In 2018, I took a job at Microsoft HQ, in our career experience program - where I worked on ML with Windows in our Feedback Hub app. In my apartment up at Redmond, I experienced the same right side body pain, this time more intense - and lasting for a whole night. I decided to check in to the local hospital, where in a CT scan, they saw my tumors had grown in a significant manner - and saw there was liquid in my lung area (often known as a pleural effusion). Again, the pain went away, so I reported it to my Stanford doctors, and thought nothing of it. In December of 2019, right before the start of the pandemic - the pain returned - this time so did difficulty breathing, fatigue, and the inability to do things I had always done, like run - go upstairs, walk normally. I checked myself into the Stanford Hospital, and they saw again - growth of my tumors and a massive pleural effusion. They drained the pleural effusion which was pressing my lungs, and things cleared up for me. The tumor growth in my pleura (area underneath the lungs) caused the liquid build up, which causes many of the other symptoms. I was clearly a symptomatic patient and I had to do something about the tumors in my lung area.

Most of the tumors concentrated on my right lung, while there was some (one or two) on the left area, those curiously had not grown at all, and were causing no problems on that side. My doctors at Stanford had no clinical trials going on for ACC, and the limited medicine available for me was not worth trying at the time. They suggested I look elsewhere. Fortunately, living in the Bay Area has its many blessings, and UCSF had a clinical trial opening up for ACC. This experimental drug that was used in China was achieving some significant results and reduction of tumor sizes for folks there, so I decided to give it a try. My job at Microsoft used to be all-in person 5 days a week, and since the pandemic - the switch to remote was in disguise a pure blessing for me. My managers and co-workers were wonderful in-person in helping me deal with the one-off appointments I had with doctors to monitor me, but since the hospital stay in 2020, and now the clinical trial moving forward - they were extra supportive and sensitive to the matter, giving me the space and time, I needed. I realized one important thing from my experiences as a teenager, to one as a young adult with a full-time career. Things seemed scarier now. During my hospital stay and time recovering, I had two options to deal with the immediate problem. Lung surgeons were advocating me let them go in a debulk the tumors in my lung area, meaning a semi-invasive surgery that is not curative in intent, but means to lessen the symptoms. I then had the option of any type of therapies (like chemo, or drugs) to help do the same, with emphasis on not curing anything, but just managing it. I was even introduced to palliative care, which at the time I equated with "hospice" care. I was scared beyond belief. I went into a depression right after I was released at home and had to go on anti-depressants for the first time in my self. I had hours longs chats with my family, many of whom are doctors and was just lost in the amount of paperwork and processes I had to go through just to get in a clinical trial. Sorry for my language, but this shit just got a whole lot real for me.

When I met with my UCSF oncologist, he was super knowledgeable, and had so much data and was one of the leading oncologists on ACC in the world. I felt okay for a brief period of time in between my depression and the world of trials ahead of me. There was one point where it all felt okay, then I asked what I thought was a stupid question at the time. "How long do you think I might have left". It's a curious question to ask for someone who was so optimistic about this in his teens and is a super optimistic person in general. He replied, "each case is unique, but typically after we see some type of growth and symptoms, maybe 5 years?" What the hell, 5 years only? So, I'll be gone by 2025? I fell into another depression and began a futile exercise of reading any journal entries or scientific articles I could find on prognosis for ACC patients. The thing about a rare cancer like ACC is, its study sample is so small, that you can't really make a reference to things like prognosis because the study sample isn't even big enough to get a true statistical answer to that type of question. Cases are so out there that some folk's experiences things like 5 years, and an equal amount experienced 30+ or more years. It all depends, and listening to my body, following the trials, and keeping my self-going on whatever science I could is the best path forward.

Once I started on my trial, I felt better. I had 3-month scans during the trial to track progress and follow the tumors, and for the start, everything was working out well. These experimental drugs typically have a lot of side effects that come with them, but I was not experiencing most of them. I could still give the level of attention and care I usually do at work, and maintain the lifestyle I wanted to, with a couple of adjustments. I had copious amounts of doctor visits, tests, scans, and draws I had to complete, and again my manager and co-workers at Microsoft were supportive and let me get everything done, while I continued to excel at my work and productivity. During the trial I began to start experiencing more and more symptoms, so I had to manage in the ways I could - adjusting my meeting schedule, pushing back on some projects (like video production, sometimes I just was so tired I couldn't record my sessions with the usual umph I liked), and scaled harder on others. I felt so flexible in how I worked that I knew my life would be manageable and I did not have to sacrifice my health or my work. When my initial trial ended due to progression of my disease, I went on a new therapeutic, which offered a little more side effects, but I could deal with them in a similar way. I was still supported at work, even though management change, reorgs and even the current uncertainty we all face in tech.

I currently am still going through those trials and tribulations and managing to contribute above and beyond to my professional life and live my personal life - even if it's gotten harder to do so. This is done because I can be open to those in my life, and in my professional life about what I am going through. Everyone should be able to do so, and any fear of rejection, retribution, or issues of performance - should be discouraged - even if it's already prohibited by law. We know that 50 percent of us who have a cancer issue are afraid to report it to our employers. 50 percent of us will experience cancer in our lifetime, so why should we be afraid? Until this day, I shared my story with few people, but I wanted to?share it with you all in support of #workingwithCancer - a pledge to help open up the dialogue of cancer in the workplace and getting companies on board to normalize this type of sharing and conversation.

I am glad that #Microsoft signed up for the Working with Cancer Pledge - which helps provide a more recovery-forward culture at work for employees with cancer. I believe there is so much more work to do, to de-stigmatize the notion that people dealing with #cancer is less productive or are somehow burdens to a team or a company. By law, discrimination or dubious practices against a person with a disability (of which cancer is), is illegal, but we all know how at-will workplaces can be difficult for employees. I am hoping that sharing my story lets the people around me know that high-performing people can still have struggles underneath - and still need grace and support. We all do no matter what. I will continue to fight, and progress as much as I can - and I hope to have your support.

Naeem Sufi

Experienced WebFOCUS Development Specialist | Business Intelligence Analyst | Customer Services | Business Analysis | Data Science & Data Analytics | Technical Solution Designing | Project Leadership | Quality Assurance

2 个月

Keep fighting, Umayr! Insha’Allah, you will overcome this cancer and return to doing all the things you love and want to do. I pray that Allah grants you strength and complete shifa (healing) from this illness. May Allah’s mercy and healing surround you, and may He give you and your family the patience and resilience to get through this. Ameen.

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Lois Prentice

Dev-Ops Business Analytics, Tableau, SQL, Excel

1 年

Thank you for sharing Umayr. Keep fighting! I agree with you, cancer does not always mean you can't work. In fact, work often keeps us going to stay positive and focus on something other than the battle. Stay positive, technology is getting better everyday and making great strides in the medical field. Wishing you well.

May Allah SWT give you strength and shifaa-e-kamil from this affliction.Aameen!

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