How do you get through life with a smile on your face when you keep getting hit, blow after blow? How do you keep picking yourself up after getting knocked off your feet? I suspect the answer to this is different for each individual but I’m going to try to elaborate my experiences and how I dealt with my circumstances, for the last 3 years have been insanely tough on my family and myself, so much so that I felt like all of the bad luck in the universe was raining down on me.
…We’re in India for work. I have been extremely fatigued lately. Bleeding profusely. It’s probably all the stress from all the packing and moving, 3 back to back IVF cycles which still felt like yesterday, a miscarriage, still grieving Sunshine (our Golden Retriever) even though it has been 4 years since we lost her and Thunder’s (our Belgian Sheepdog) declining health. That’s okay. I’ll see the doctor soon. Right now, my Thunder needs me.
Thunder seems very excited to be in India, what with all those disgusting smells all around! He gets sick soon though and goes through a couple of surgeries. He is suddenly paralyzed. He needs help to eat, drink and do his business. He needs his dressings changed, his stitches kept clean and timely medication. It’s okay. I just need to be strong for now. I can take pain killers. I’ll see a doctor soon…thus, I prioritized Thunder. What gave me strength was that at least we were all together. We had managed to make the journey across the seas safely with Thunder at his age. We could get through this.
My husband is extremely stressed. He’s in the middle of major changes at work. They’re expanding. It’s a customer facing product. One bad season could tank the business. In the midst of all that, Rahul has to be present for Thunder as he needs to be carried outside and held up in order to do his business. That’s alright. I can look after Thunder while he’s at work. I’ll rest soon, once Thunder is better. I know he can do it. Thunder is a survivor. He’s my baby after all!
People are advising us to put Thunder down. The Vets are saying he will never walk again but the way I see it, Thunder just needs swimming and physiotherapy. That’s okay, we can rest when Thunder walks again. I can see in his eyes that he wants to live. He’s not giving up so I’m not going to give up on him.
It worked! Thunder walked again! He needs support but he can walk!
We’re exhausted though. I’m bleeding too much and I’m low on hemoglobin. I need a blood transfusion. Okay done, but this is a temporary fix. What is wrong with me? What is this fatigue? Why am I not able to walk 10 steps without panting? They said it is the fibroids. I will stop bleeding once they have been removed and I will be all better.
Me: Should we do a biopsy before the surgery?
Doctor Khurd (Pune): No, there is no need. We are removing the fibroids anyway, so what is the need? We will send it for biopsy after the removal anyway as that is standard procedure.
Layman me trusted this.
I have my first surgery. They morcellate the fibroids inside me. Samples are sent for examination. Why is it taking so long for the results?
Finally they tell me. It was not a fibroid at all. It was cancer. It just mimics a fibroid. It is aggressive, it is persistent, and it has gone through my blood vessels and got supplied to the rest of my body including vital organs.
Once the initial shock wares off, we spring into action. Phone calls being made, referrals, contacts, research…friends and family trying to help any way they can. People wondering if I’m going to take action against the doctor. I can’t be wasting my energy and resources on all that now. I must be forward facing. I’m going to concentrate on the hope and I’m going to draw from all the love which is pouring in from friends and family. Besides, the full implications have not really sunk in yet.
I have CANCER! It is the bad kind. Also, incredibly rare so it makes sense that I should get it. After all, Murphy fashioned his law on me .That’s okay, I’m going to prove Murphy wrong.
There is much discussion about what protocols to follow, which poisons to use, should chemo follow the radiation or the other way around? This cancer is so rare that there are not enough studies and no set protocols. Finally, they decide to do the radiation first, followed by intensive chemotherapy. But first, the urgent second surgery. My incision starts above the navel and goes all the way down. They remove everything – uterus, ovaries, tubes, surrounding tissue, some nodes as well as my Omentum.
That’s alright. They’re doing all they can. They’re trying to save me. I’m surrounded by love and well wishes. All I need to do is be a good patient. I can take the pain. I can help them along. I’ll fight this. My husband, my mother and my Thunder are waiting for me.
The surgery is done. All the tragicomedies which followed with the hospital screw-ups etc. belong in a sitcom! But I got through the hurdles. If I can fight cancer, what are a few mishaps along the way? They can’t keep me down.
Now starts the radiation. It is going to take commitment as I’m not allowed to miss a single day for 25 straight days. Intense! So, guess what? I catch swine flu. LOL! Yup, the low immunity and all that. So now I have to travel 1 to 2 hours (depending on Bangalore traffic) braving my high fever. Then there’s an hour-long water protocol at the hospital to prepare for the radiation. But wait, I must sit in line first, waiting for my turn. Then I travel back another 1.5 to 2 hrs (evening peak hour traffic) to get home before I can get into bed. It’s alright. I’ve already taken so much, what is this compared to that? I can do it. My mom feeds me with so much love when I get home. I’ll just look forward to those meals as my reward for getting through the long day. Two of my Aunts have come all the way from Pune to help me through this difficult time. Sooo much love waiting for me at home!
Somehow, I get through the radiation. Now I get a short break before Chemo, YAY!
I’m so happy to be at home. Drinking coconut water all the time, people making me fresh food. People doting on me all the time. I could not have asked for more.
Now, I’ve got to use this break to get strong and prepare for the upcoming chemo. They did say that they were going to max out the dosages. Each cycle would last for 3 days, 15 hours per day. I was told that I had to make sure to drink 4 liters of water each day or else my organs would suffer. I should also expect to lose all my hair. My scalp would hurt when that started. I thought, why wait for the scalp to hurt? Better to save the pain for other things. So, I got rid of my hair before I checked into the hospital. My husband and I spent the night at the Leela’s. Ate good food and drank good wine. Wore new silver earrings and looked pretty even without the hair. Early in the morning, Chemo was here.
They would stop chemo every 4 hours for an injection without which my kidneys would fail. This injection could not be 10 minutes late. The nurses often forgot about it so I had to set the alarms myself and get behind them. Rahul would be calling from work for the same but sometimes he could not get out of meetings. Weakened state or not, I could not afford to fall weak. That’s okay, I can do this. I just have to set the alarms and start making noise. I would whoop their asses if they delayed my injection! I’m a lioness!
I was always flaunting my baldness and making jokes about my husband’s long hair. What’s yours is mine I told him as I wrapped his long hair on my head
I even made up a funny song about it, to the tune of Sinead O’ Connor’s Nothing Compare’s to You. Except, mine was called “Nothing Compares to Hairdos!” My husband then suggested that I should make a video on it. So I got busy right away! We did this project together and had a lot of fun doing it. It kept me distracted through my Chemo cycles. Here’s the link https://www.facebook.com/sanjyotrahul/posts/10214131436095090 .
Chemo was finally over. There were many ups and downs, but I got through it. So proud of myself. Now for the healing. But why should it be that easy? The radiation/chemo gave me fissures. I have never known such pain in my life! I could not bear to sit and I could not bear to lie down. I got Chemo Brain and my mind was in a fog which I cannot describe! It was bad enough for me to consider stopping chemo in the middle of it! But that’s okay. It’s supposed to be temporary most of the times. I should get better with time. Of course, I will.
I had decided to be open about my journey. I’m fierce like that! I wanted to show other cancer patients/survivors that you don’t have to suffer alone. I was right! I got so much love and support from friends and family. I feel very lucky to have had that. I even made new friends through this journey. Also, it is not something to be ashamed of. Life dealt us a hand so we play it the best we can.
To combat the morcellation error made by the previous surgeon, my doctors threw the book at my cancer. It seems to have worked. So far, my scans are clear. I do have lingering side effects from the harsh treatments, but I got to live so fair exchange I say!
Rahul uses my medical borderline disasters as fodder for his FB posts. I laugh on reading them because the alternative is to cry
I think he knows this!
So, the next time life gets you down, just tell yourself “it’s okay!” Find a reason to look forward and then simply power through. Prioritize yourself, not others. To be able to help your loved ones, you need to be healthy and happy in body and mind.
Today, I have some guidelines by which I want to live my life:
• Always look at the glass half full. It helps tremendously to get through difficult situations.
• Get rid of negative influences in life – be it people, things or situations. It’s not worth it.
• Do not hoard emotionally. You have to let things go. Treat it like sunk cost. Face forward.
No matter what the future has in store for me, I know I’ll be alright. I have fire in my belly and I will not go down without a fight. I’ll deal with it when I have to. For now, what I know for sure is that there are many laughs in my future, seeing the world with my husband, art projects with my mom, silly doings with friends and more beautiful furry babies! Did I mention that I’m a foodie? Yes, that too
Life is beautiful!