I Choose to SMILE

I want to start by wishing every one of you a fabulous 2023!! Hey, its still January, so I am still within the mark 🙂

I am starting this blog addressing a couple of most commonly asked questions:-

How much time do I spend writing a blog? I choose my good day to write – physically in minimal pain and mentally in a happy frame of mind to keep the blog as honest as possible. I finish writing most of the time in one sitting.

How is the pain after a round of chemo? I wish this answer were so simple. It’s not like a wound or a pain in a particular part which, with medicine, should see relief. Unfortunately, to treat the cancer cells, the entire body – all the nerves and organs- must endure the pain of a crime even though they may have no part to play. So typically, after a round of chemo – there is the existing cancer pain, the side effects of chemo, plus other things that you would read along in the blog.

In my last blog, I left it on a cliffhanger, not knowing what my MRI results would be of my brain and neck with the spread. My brain is intact, and I am still operating at 100% of my intelligence, but I cannot say the same about my neck, spine, liver, and stomach. So yes, the spread is in all those areas, but I am also learning with C that there is always drama, and it can sometimes be as big as a Pathaan or Avatar release or as small as an independent film release. This one has all of it, and you won’t be disappointed. Get your popcorn tub and tissues; you might need a box if you are very sensitive, but I promise you will SMILE with me by the end.

HAWAII Vacation

With my MRI results – my cells were shrinking with the ongoing chemo and immunotherapy, and the doctor gave me the green light to travel; we decided to do a two-week Hawaii vacation which we have been planning for the last three years. Yep, you read it right. I told you, there is romance, drama, ocean, island, food, animals – you name it! Everything was booked with insurance for the first time in all these years, from the tickets to the stay, because there is always a last-minute cancellation chance with my health.

We broke the news to the kids a week before the trip. They were euphoric, knowing we would actually be doing a family vacation after three years, traveling together in a plane.

For the last three years, I couldn’t even host my annual holiday gathering with friends in Austin, so I also planned for that. Thankfully, that could also get done, and it was a laughter riot with everyone sportingly and cheerfully participating in the white elephant gift exchange. There is a task that each gift owner writes and brings along to be performed by the person picking the gift. So when you decide to snatch the gift, you must also perform the task. Try it out – it’s a fantastic winding down year-end activity with friends and family.

A few days after the party, I noticed a boil getting bigger near one of the hysterectomy stitches. Yes, six months after the surgery. That was infected, and I was on antibiotics for the next ten days – 4 pills a day, one every 6 hours. With that many antibiotics to keep my stomach guts at comfort, I started consuming buttermilk. Sometimes I think buttermilk for South Indians is like the Windex from “My Big Fat Greek Wedding.” It is the solution for everything.

As soon as we landed in Hawaii, we went to the grocery store and picked yogurt there for me to keep the buttermilk going for some time. Although we traveled after my 10-day course of antibiotics, I did not feel good in the stomach and, with an onset of pain, knew the antibiotics did some damage. But by almost the second week, I called my doctor in Austin when the pain became unbearable.

They asked me to stop dairy immediately and switch to BRAT (Banana, White rice, Applesauce, Toast) diet. If there is still no relief, I should visit the ER asap to check for intestine inflammation. Of course, it was easier to switch to white rice immediately in Hawaii. While the family enjoyed incredible seafood, shaved ice, and island food, I ate a cup of white rice. Shhh… I did enjoy some of the fresh seafood the first few days, and it was delicious. Pineapples had never tasted that fresh and sweet before for me. With all the chemo treatment, I have become now intolerant to diary.

On the night of Dec 30th, after we spent the entire day in the Volcano national park, Robin and I decided to go to the ER after dinner. Although I had some relief from the pain after switching to the recommended diet, we did not want to risk it. We left the girls back in our Airbnb room and drove to the hospital, not knowing what to expect, but one thing was sure, I told Robin I wouldn’t be spending the 31st and 1st in the hospital. The CT scan in the ER showed no intestine swelling, but the cancer cells in the liver showed some increase. I did not overthink it because I knew they had no comparison to my previous report and wanted to keep the vacation flow going.

One of the days when the girls and Robin went scuba diving, I spent the day watching a ton of humpback whales from the balcony of our Airbnb. It was a sheer joy to see them in the natural habitat, but what struck me was – this 40-ton animal appeared to own the ocean and voluntarily decides to breathe. Its breath reaches up to 30 feet in the air, creating a cloud of mist or spray that almost everyone on the ocean is looking for, but it also dissipates very quickly. When identified, my problem appeared to be as tall as the whale’s breath, but I have so many (Dory from Nemo) constantly telling me – When life gets you down, you know what you got to (gotta) do, JUST KEEP SWIMMING, JUST KEEP SWIMMING. I am just extremely thankful for all the Dory in my life for the encouragement.

Back in austin

Chemo, Immuno, my bone meds, the entire welcome package was waiting for me. My stomach pain during the whole Hawaii trip and back home was on a scale of 5-8. That did not stop me from enjoying my time with Robin and the girls. We almost did a 5-8 mile walk every day – don’t ask me how I managed it with the pain. All I knew was that my shorts couldn’t stay on my stomach – nothing could touch my belly.

Because I still had pain during the chemo appointment, I had to immediately make an MRI appointment, meet with my GI specialist, and get started on my pain meds to get immediate relief.

For some reason, I woke up early that day, by 8 am. Hey, don’t judge me- 8 am is still early for me. I cooked 3-4 curries for the family, and if I get admitted, it will be accessible to them. As soon as my GI touched my tummy, he felt something was wrong, and I should go to the ER immediately. He thought this was more than a GI problem, which is why going through the ER for hospitalization was recommended.

As a metastatic cancer patient, the ER usually takes me in quickly and always gives me a private room to avoid infection. With chemo, immunotherapy, and pain meds, my stomach was burning, so I couldn’t take the pain meds orally anymore. So in the ER, they first gave me IV pain meds and helped me get some relief from it. So for the next few days, I was getting IV pain meds in the hospital every 6 hours. As the med would start to wain, the pain level would creep in back again, and between all of this, we got the MRI done in the hospital. We were waiting on the MRI results to see if there had to be a colonoscopy done or not to identify the problem for the pain in the stomach and which eventually started to hurt my back.

Poor response to second line of treatment

When I saw my oncologist walk into my room on Friday morning, I knew it was not good news. My heart sank looking at her, but I quickly gathered myself to listen to the disheartening news again. So the MRI report showed the cells were increasing in number and size in the stomach, spine, and liver. Which meant I was not responding to the second line of chemo treatment and immunotherapy. So that had to end immediately. Within a month, things changed from shrinking to growing.

As soon as I called Robin and shared the news, he was with me in the hospital within the next 30 minutes. We both cried our hearts out. Then came sharing with sisters and parents. Robin shared the news with the girls at home and got them to the hospital. It is never easy to tell the girls that I am not responding to the treatment plan. You can see the fear in their eyes, which they think they are covering from me, and then their tears start to flow with their questions. I am immensely proud of their resilience, strength, and love for me whenever they hear disappointing news. We had dinner together after a long emotional family talk.

With a poor response to the second line of treatment, it almost goes back to ground zero and starts all over again. So six months of all the pain I endured with the chemo becomes meaningless because I am starting back from the same place with the increase within the month. What prevented me from getting depressed and complaining is – I WAS THERE FOR 6 MORE MONTHS WITH ROBIN, KIDS, AND FAMILY. That is extremely important for me.

That night when Robin and the kids returned home, I was restless and crying alone in the hospital room. My nurse was super supportive and there with me. With the pain meds, I slept off, only to be suddenly woken up at midnight by shadow. Robin was sitting there and crying. With a promise to fight, I asked him to go home.

They were canceling the colonoscopy, knowing that the pain was because of the increase in cancer, and I was discharged the next day evening, with the pain being in control enough to be managed with oral meds than IV. I have tried many pain meds over the last two years and feel I have developed a special connection with LORD SHIVA. The most potent pain meds, the IV ones, almost instantly showed me heaven, hell, and ocean simultaneously.

Sound effects and letdown

That’s my bowel movement. The blog wouldn’t be complete without speaking about it. Rewind to Hawaii and Austin – my shit has been a colossal letdown. Every MRI shows no bowel obstruction, but with cancer in the stomach, this is becoming extremely challenging, even with laxatives. Every bowel movement is nothing short of delivering a 6-pound baby; I say this with no exaggeration. The sound effects are because of all my screams from the bathroom. Initially, Robin would keep running to the toilet, but now he knows he will get the call from me. There are so many days when the rug in the bathroom invites me to give up pooping and lie down there. Sometimes, I have no energy to bear it anymore, but remember, Dory taught us – to keep swimming. Keep Pushing. When I got discharged from the hospital, I had taken all laxatives – milk of magnesia, Miralax, enema, and suppository. A combination of these has to be taken to get relief from the stools. After all the sound effects, drama, and pain, sometimes when I end up pooping 6 ounces of shit, I want to tell it – “yep, u deserve chullu bar paani main doob marna .” Sorry, there isn’t a good English translation for it.

more drama was on the way

Hearing the terrible news of poor response to the second line of treatment, my sisters, Robin’s sisters, have all taken turns and are with us in Austin to cheer us up. All our friends took turns meeting with me. Of course, the family and friends who cannot be here, video calls, messages, everything, and anything to cheer me continues. It all helps me to keep fighting.

I had to do another MRI with the third line of chemo treatment starting for them to get the baseline. The morning of the MRI, I woke up feeling nauseous. On the way to the clinic and in the clinic before MRI, I threw up. These MRI sessions are typically 1.5 hours for me because it has to be done for the entire spine, abdomen area, and liver with and without dye. I am just so thankful for the many songs that I know I can sing in my head to maintain my calmness during the MRI. Otherwise, the magnetic sound can drive you crazy. The songs also help me keep a tab of the time in my head approximately.

When I came out of the MRI with the throw-up, my stomach pain magically vanished after 45 days. I was on cloud nine to get back to some normalcy. I ate a proper lunch and saw no pain even after eating lunch; I was thrilled to be sleeping in my bed that night. Yes, with all the pain, I would sleep on the couch in a sitting position.

That was short-lived. A boil on my forehead turned out to be shingles by late evening. We rushed to the ER again; they misdiagnosed and sent me back home. The next day morning in my onco clinic, it was confirmed shingles. I am on Day 5 of it as I am writing this blog. I start my 3rd line of treatment as soon as I recover from shingles. With compromised immunity because of chemo, shingles does commonly occur in cancer patients. Shattered would be an understatement to explain my emotions the day I learned about shingles. It felt like I was fighting with no positive outcome. I hit rock bottom that day. I told Robin to stop loving me because I thought that he was holding me back, and I was ready to go.

For the very first time because of shingles, I ate on my bed. My sister and Robin’s sister pressing my legs to help relieve from the bone pain that I was having with the WBC shot.

why i choose to smile

Your ability to rebound is directly proportional to your willingness and courage to face your version of rock bottom.

Many years ago, someone told me – Don’t show your teeth and smile because your gums are seen with your smile. I took that comment too much to heart and kept frowning in all my pictures, including my wedding pictures. One day, I decided to change it, and you always see me smile fully. Today, I got reminded of it because we control our attitude, our smile, and when to smile. I choose to smile at cancer, and although the road ahead is not easy, that’s my attitude. I do cry in pain sometimes, and I want to stop doing it as I feel cancer doesn’t even deserve that little importance, so I will try my best to avoid crying.

So please send me a smile and smile with me as much as you can.

As Shahrukh Khan says Joh bhi cha hoon woh main paon, Zindagi mein jeet jaaon, bas ithna sa khwaab hai” ( I” ll attain whatever I desire, I” ll win in life, I have just this dream.)