When Cancer Invaded My Family – Part 2

Continued from here.

With the tumour blocking her food pipe, Sonet was robbed of the first line of defence against any disease – an adequate intake of nutrition. The first thing the doctors did was to widen her food pipe with a stent to help her consume spoonfuls instead of sips. That’s how we then measured each day’s progress: today she had half spoon more, or one spoon less. However, the first stent was too wide and terribly painful; so she underwent yet another endoscopy to have it replaced with a narrower one.

Then, to enable the chemo drugs to be administered without repeated intravenous injections, a power port – that connects to a vein internally – was implanted under her collarbone. Chemo was set to begin on a fortnightly schedule, once she’d recovered somewhat from all these procedures.

Technological advances enabled her to spend only a few hours at hospital for chemo. A small pump with the chemo drug would be inserted into the port via a tube, administering the drug in controlled doses; after 4-5 hours of monitoring, the pump was placed in a bag she’d wear around her waist, and she’d return home, wearing the whole apparatus for the next 48 hours. As they lived far from the hospital, a nurse from a nearby facility would come home to remove the pump and give follow-up medication.

The first time, a blood thinner called Heparin was used to flush clear the port tubing. It also helps prevent clotting in the veins. However, a few hours later, Sonet broke out with a major allergic reaction. 911 had to be called and she was rushed to the hospital. Later, it would seem like something right out of a Hollywood movie. But at the time, it was the scariest thing my family have ever experienced. If not for the prompt response of the emergency services, Sonet would have died of anaphylaxis at home that day.

Luckily, she emerged relatively unscathed from this episode. Saline water would replace Heparin for the future sessions. However, the brush with allergies continued, though on a much less dramatic scale. Sonet is in the minuscule part of the population that is allergic to anti-nausea medication. So she had to bear the gut-churning nausea and vomiting post-chemo. This would subside after a few days. The week after chemo, she’d go to the hospital for a booster shot to keep her immunity up. The rest of the week was for her to regain some strength before this whole cycle, minus the 911 incident, started again.

After four such sessions, Sonet underwent another round of tests that showed the chemo had worked: the tumour had shrunk! She then became a surgical candidate, and was given a month to build strength. Shortly before the scheduled date, my father returned to Chicago. And then in early July 2016, surgeons performed an eight-and-half-hour-long esophagogastrectomy – a surgery that removed not only the tumour, but  her sphincter, and large parts of her food pipe and stomach too.

With such major internal changes, here began the most excruciating part of Sonet’s road to recovery. The complicated surgery involved multiple incisions around her chest and abdominal cavity, the biggest of which spans her right side, from back to ribcage. As her chest cavity was breeched, she had to blow out air to re-inflate her lungs every few hours. This was torturous.

In addition to the IV and oxygen, she was also hooked up to equipment to monitor fluid drain. Right from the day after the surgery, she had to walk a round of the hallway four times daily, assisted by nurses on either side to help with all the equipment. Sheer fatigue and pain were no excuses for slacking in this exercise, which was closely monitored and progressive improvements noted. The doctors had to ensure that the internal joints were leakproof and her remaining digestive system had reawakened post-surgery before she was allowed to start consuming fluids. This took about a week.

My parents practically lived at the hospital during her stay, only returning home briefly each morning to freshen up. Small but significant victories were Sonet’s first sip of water after five days surviving on drip, and her first sips of soup on the sixth day. Once normal bodily functions resumed, Sonet was able to return home after eight days – still in tremendous pain and weak as a baby. Every little movement, even breathing, still hurt. She spent the following weeks in a pain and medication-laden fog. Were it at all possible, we’d have gladly borne that pain for her. Sadly, there was nothing we could do except keep her comfortable, our thoughts constantly on the Lord for the strength to get through each day.

Meanwhile, my grandmother Mercy who’d since recovered from her illnesses, still remained unaware of the crisis unfolding. The best we’d been able to come up with to explain my mom’s presence in Chicago was that she was taking care of Sonet who had severe acidity. Mercy was concerned, but not worried. In typical Indian grandmother mode, she moved on to more important things to worry about – why Sonet was still unmarried. My conversations with her in those days were taxing; I find lying through my teeth exhausting.

After a month, dad had to return to Abu Dhabi. Sonet by now, was stronger, being able to eat slightly better than before. Though the surgery went as the doctors hoped, we weren’t done yet. Another four sessions of chemo still lay ahead. The thought of it sent her into tears a few times. We rallied around her. We’d crossed the biggest hurdle of the surgery; we couldn’t give up now that the finish line was in sight. The chemo process was the same as before; but because she could now eat, she recovered faster. Towards the end of the fortnight, she was sometimes well enough to drive and go out.

Finally, in October 2016, Sonet finished her last chemo session. On the day of the final booster shot, she rang a bell at the hospital to signify successful completion and was applauded by the staff on duty. The final review a month later, at long last, gave us the cancer-free verdict.

Though Sonet was able to beat cancer, it has made a permanent impact. Her smaller stomach can no longer handle the three daily meals; instead she has six smaller meals, one every couple of hours. She has to be particular about chewing food well. She can eat everything, even outside food provided it is hygienically made, but must limit highly sweet, fatty and acidic foods. At this point, Sonet’s immunity and stamina are still low. Though she resumed working from home after her review, her body is still catching up. Whenever she overdoes it, physical exhaustion hits hard and fast.

So the fact is, that at present, Sonet and Mercy both need help. Sonet cannot live alone as she used to, at least for the foreseeable future. If she has survived, and made it thus far without any undue complications, it is entirely due to the loving support of her primary caregivers – our parents. Sonet’s strength – physical and spiritual – results from their unswerving faith and tireless efforts towards ensuring a healthy diet and clean environment.

The critical question that remains unanswered: where is Mercy’s primary caregiver?

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