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What No One Tells You About Life Is That Nothing Is Impossible

http://www.cpallavirao.com/life-myasthenia-gravis/

 

What no one tells you about life is that nothing is impossible, even for people suffering from chronic autoimmune disorders like Myasthenia Gravis. This photograph which hangs in our room is proof of the same. Come, let me tell you the story behind it.

 

May 2011

 

It was the 3rd Chemotherapy cycle. Things had changed over the last 5 years. Unlike the past experience of a total of 6 to 8 cycles, this time it was double. 16 alternate cycles of a big and a small chemo. Technically speaking the smaller chemos were supposed lighter and less horrible, however, I could hardly differentiate between nausea and queasiness of the two.  Both were as horrible. The only difference was that the smaller one was under day-care while the ‘main’ one had me admitted for a night and two days.

I was either feeling pukish or was puking all through the illness. I would carry a plastic dustbin with me from the bedroom to the living room if I dared to venture out that is. With the toxic medicine in, apart from other physical side effects of quivering fingers, shaky hands, nightmares, dizziness and a noisy churning tummy what sets in is depression. A feeling of ‘I am good for nothing’, ‘I am capable of nothing’ and the likes.

 

The Biggest Fight, However, Is To Continuously Ensure To Put Up A Brave Front In Front Of A Husband, A Son, A Brother And A Mother

 

That is the tough part. To smile relentlessly and answer, ‘Oh I am doing better” takes its toll after a while.

 

The Depression of May 2011

 

Experience from the 2005-06 experience of Chemotherapies, I knew what was coming next. Hair fall. This time it had delayed a bit, else the particular medicine injected in me would have started to act on my hair follicles from the 2nd cycle onwards.

The medicine was showing its (side) effects. I was losing my strength. All I wanted to do was lie down or sleep. As if to cut me from reality. Each day I wished, that when I woke up, I would find it to be just a bad dream. That I would get up and get on with my life. Alas, that was not to be. Truth was, I had a number of chemotherapies left which would be followed by 26 sessions of radiation. Myasthenia Gravis had struck back the second time with 5 tumors that had been removed 2 months earlier from behind my left lung.

I had undergone a major surgery where a part of my diaphragm was cut. The trauma of an operation only to be followed by chemos and radiation. Added to that, a growing child who demanded attention and love, both of which I barely managed to give. This compounded the depression that was slowly and steadily setting in.

Doctor, Can I Take Her Away?

 

I vividly remember feeling embarrassed when Rahul, my husband asked Dr. Harsh Dua, my oncologist during the day-care smaller chemo if taking me away on a short holiday might do good? The otherwise minimal expression face seemed to lift his eyebrows and even managed a smile. He replied, “Sure!” I simply shook my head side to side.  I knew with him around nothing is impossible. Rahul is mad. But whats up with Dr. Dua?

Rahul continued, “Can I take her to Simla?” The doctor nodded in an affirmative.

Once home an ever excited hubby mentioned the vacation. I turned around supremely upset. How could he even fathom going on a vacation in the middle of a chemotherapy cycle? I told him clearly not to think or even discuss it. Moreover, Simla? I could not bare opening the god damn it refrigerator fearing I would catch a cold. How did he even think the hills would lure me? Suddenly feeling a Meena Kumari, I commented how its a beach where I feel free to breathe and how hills make me claustrophobic.

The trip to Simla died an early death that day. Phew.

Luckily my sister-in-law came visiting with her daughter. Yeah, to take over the burden and responsibility of looking after me for a couple of days. With Ruhi around it was nice. We had loads to chat about. The two kids had good company in one another. It was a pleasant change.

Meanwhile, I continued puking all over the place.

One Evening

 

Rahul got back from work early that day. Real early. 6 pm. I had a questioning look. He had a few papers in hand. But there was something about his body language. I knew there was something more to his coming back early at a normal descent time than what met the eye. I suddenly had a sinking sensation. What papers were those? Did he meet the doctor? Did the doctor say something negative about me and my reports?

He noticed the lines of fatigue and nervousness on my forehead. He gave his classic laugh and got the kids and his sister together in the room before dramatically announcing and ordering, ” We are going on a holiday! You have 1.5 hours to pack your bags! Your time begins now.” The kids barely 7 and 8 years old, jumped in excitement. I almost died in my head. The Simla hills and the northern Himalayas seemed to close on me like a hovering beast suffocating me.

I was upset and angry. Why? Did I not have enough on my platter, that this too is added? I firmly asked him to pack his bags and that of others, for I was going nowhere. I could not.

He smiled. Came closer. Handed me the papers. I opened them. Could understand nothing. A flight to Simla? A night flight to Simla? He had gone bonkers.

He lovingly hit me on my head, looked at the kids and said, “Make sure to pack your swimwear too. We are leaving for Thailand tonight.”

 

 

http://www.cpallavirao.com/life-myasthenia-gravis/

 

Opened mouth,  I gave a gasp as did the rest in the room. “Thailand? Are you out of your mind?” said I. The kids had instantly run off to the other room to pack their trunks and bathing suits. Ruhi was giggling and laughing till she saw my expression and tried her best to control her emotions. I was livid. Like how.

I (fuming): Hope you know I have my next chemo coming up?

Rahul (calm): Chill. That is 8 days away.

I (fuming): You know it is impossible for me to travel now. I have no strength. No mind.  Cannot travel.

Rahul (calm):

 

Nothing is impossible

 

I (fuming): I am not going anywhere without taking the doctor’s permission Rahul.

Rahul (teasing): We did. Remember?

I (fuming):  You took permission for Simla, not Pattaya.

Rahul (showing me another paper): I just did – this afternoon.

I (fuming and pointing towards my right shoulder-chest): You know I have a chemo-port inserted here. I cannot move through security without a letter from the doctor and that certificate/license.

Rahul (waving another paper and card): Yes you cannot. But I have it here. Now you can.

I (fuming): I cannot pack at such short notice.

Rahul (calling out to his sister): Pack her clothes Ruhi. There you are sorted. Now simply pack your medicines. Perk up your spirits, our vacation begins now.

Nervous Excitement

 

I wore double layers of clothes to brave the cold airport and flight and my sneakers. We reached the airport past my usual bedtime. The kids were brimming with energy and enthusiasm. Ruhi was being careful, lest I blast her in my nervous excitement. Poor girl. The trip we had forever been planning in our head was actually happening but never had we thought it would be under such circumstances. We had not taken a family holiday for the past 3 years. And this was one crazy holiday plan, you would agree.

 

http://www.cpallavirao.com/life-myasthenia-gravis/

 

I kept cribbing and muttering all through the next one hour. Packing never takes much time for me. We were done in an hour. We still had half hour in hand. And that is when the excitement kicked in. I relaxed a little. Dad was coming along too. There were Ruhi and Rahul. I would be looked after and the kids shall be pampered. Medicines were packed. I made small chits with- ‘I am a Myasthenia Gravis patient’. It had details of medicines I take, my life-saving tablet name, doctor details, chemo-port details and mentioned ‘Lignocaine’ that I was allergic too. I kept one such chit in my pocket and another in my sling bag.

This done I threw in a few more clothes. The brighter ones. My shorts and chappals. My shades. The matching lipstick.  And yes my beach wear too. We also managed to don the aqua blue nail paint.

At the airport, while the three guzzled beer, I sipped my lemon water. The flight was a fight. Not used to walking so much, I managed to twitch my back and landed in Bangkok with a stained and sprained spine. Volini was the first purchase on landing in Thailand.

 

http://www.cpallavirao.com/life-myasthenia-gravis/

 

A Breeze

 

The next 5 days in Pattaya were a dream. The beach right in front of the hotel. A 2-minute walking distance. The air clean and crisp. The sky magnificent. A family happy. Kids having the time of their lives.

The beach, the sea, the shore, the coconut trees- do something to me. It makes my heart dance. It makes me spread my arms and embrace them. The breeze has an intoxicating effect on me. It makes me dance. It makes me sing.

I let my less than shoulder length hair down. It is significant that I  mention this since a week later they would start shedding and in another fortnight I would be donning a bald scalp. To shave your head voluntarily is one thing, but when you lose hair in tufts, it is scary. When you wake up in the morning to see a bunch of lifeless hair lying on the pillow, it makes you howl. Except you howl a silent howl in the washroom, at the sink. You raise your head to look into the mirror, softly pull at another part of the hair and they come out in lumps- mercilessly.

However, that would be a week or ten days later. Right now I was in the beachy tourist destination. I couldn’t care less about my mane.

Those 5 days were a miracle. Miracle me. I came to doubt if I was the same person stuck to bed puking into that plastic bin every few minutes, back home. Where was I getting the energy to change clothes twice a day, sit for hours on the beach getting those massages done and getting in and out of the vast ocean that beckoned? The sugar levels seemed to be perfect despite consuming lobsters and prawns morning and night- while in Delhi, even a slight change from the strict menu would make the readings go ballistic.

What No One Tells You About Life Is That Nothing Is Impossible

 

And this is why I write this post today.

I woke up this morning feeling low. The past few days have been not so great- physically, mentally, and emotionally due to varied reasons. Some have been under my control but most not in my control. The latter makes you feel lousy. The sun disappeared yesterday adding to my sullenness.

I then looked at the photograph on the yellow wall. If you see it carefully, you might notice the hair had started to thin. The skin had dark patches because of the toxic chemo medicine.  But also notice the happiness on our faces. If I had not told you the story behind this snap, you would think it to be just another holiday photograph.

 

Truly, It Is All In The Mind

 

5 days of no nausea or weakness- of pure laughter, fun, good food and air and 5 days of lazing and pampering. Of cutting oneself off from anything remotely negative. Of having that perfect one-piece sleep without nightmares for a company. That is what invigorates us, no? Had it not been for the surprise plan, I would still have been on that bed dreading the next hospital visit.

This photograph. It is what I wake up to each morning. It is my morale booster. My confidence restorer.

On days like today, when many things do not seem to be going right, I look at it and repeat what Rahul always says, and what no one tells you about life is that nothing is impossible and….

http://www.cpallavirao.com/life-myasthenia-gravis/

 

Do you have a photograph with a story behind it? Share it here for others to get motivated.

 

Most of all, I wish that those medics across the globe are sincerely looking for a sure cure for Myasthenia Gravis.

 

 

 

 

 

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