A Cultured Life…

…stumbling through life with two beautiful daughters – often tripping, sometimes running!!

Day 221, d107

Lets call this my home chronicles. And I hope the gaps in my writing do not become a habit🙄 We have been home 10 days and it has been an adjustment. Swati wanted to reclaim her room on the very first night and i dd jot want to stand in her way. Though she does not know that I had my alarm set for every hour so i could check on her.

We went back to St Davids that friday and saw Dr Ramakrishnan. Absolute joy to see him and the nurses at the clinic. After the vastness of MD Anderson, StDavids feels like a toy village 😃everyone knows Swati and her parents. The pace, the vibes😇😇
we handed the papers from Dr Shpall and he said this was the smallest he had seen for a transplant! uUally there a reams and reams of notes, but Swati was a textbook case. I winced inwardly- if this was simple, God help the others and I have much to be thankful for.

There are a couple of immediate big questions- her CVC Line, the plans for NY, labs, the flushes. We decided to retain the CVC for another month. It seems that labs will follow a regular schedule into the foreseeable future. So back to the port maybe? I know that Dr. Shpall was ready to remove this for fear of infection if left in too long. Lets see where this takes us.

We had the next appointment yesterday for Swati’s dressing change and her WBC were a a tad lower than the previous reading. She is ’only’ at 106 days and this fluctuation is expected. She also had a bout of nausea and throwing up the previous night, now that the steroids have run their course. This is expected too and the doctors don’t seem concerned.


On our last day in Houston, we had a bunch of appointments. One of them was the survivorship consult. The period after transplant is wrought with change and adjustment and acceptance of changed circumstances. How do I explain this? Survivorship is an encyclopedia, with its own language and syntax. We spent 90 minutes with a chatty nurse on the road ahead for Swati. She had powerpoint slides printed out – covering food, exercise, every day care, GVH, when Swati should go to the emergency, sexuality, self care – not a little bit overwhelming. There is also a large community of transplant-ees (??) and I think it would do good for Swati to find a community to her liking. I am sure i will have more to say on this.

Vaccine – Finally!!!

This Wednesday Swati got her first Covid-19 💉 – yaaay!!! Eight months late perhaps but finally one regular thing in her life 😇 That night, I laid out some quilts on the floor next to her bed and slept in her room 😅🙈I am grateful that her side effects of the vaccine were minimal.

Thanksgiving time🙏🏽

Aditi arrived from LA this weekend. I am so happy to have both girls home. Next week I am looking forward to having Tanya, Adhiraj and Ansh with us. We will celebrate a very special homecoming.

I stepped away to flush Swati’s CVC. During the St. Davids appointment, the nurse was ready to the heparin flush to keep the lines flowing. This would have meant that we need not do the daily flushes. But. Dr. R did not want to mess with Dr. Shpall’s protocols, and so we are still flushing every day. Reminds me i must complete my article about the CVC line. I am inches away from her heart as I push saline into her everyday. Still makes me 😨🥺

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Day 211, d97

Hi everyone, we are home💕😇😎. Pulled into our driveway at 530pm this evening. Incredible feeling, lucky, blessed. Thank you to all of you who have supported Swati, me, Aditi and Srinivas through all this time.

My emotions are in a 100 different places. Just savoring the feelings.

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Day 210, d96

This morning Swati will undergo a 90-day biopsy. How did this day get so “ordinary?”

A clinic appointment at 2 pm with Dr Shpall – a hi and bye as she put it😇☀️

Getting ready to go to the hospital…

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Day 199-205, d85-91

So this is a recap of the past one week when we had radio silence🙃

Friday, 10/29 was a normal dressing change day. Fresh off the ER, Swati was on amoxicillin for no known cause, but to fight off the slight spike in temperature and the ongoing cough and nausea. My sister-in-law, Bala arrived from Toronto Thursday to see her niece and we had planned to make good use of that time. I caught up on all the talking that I had not done is so long!! It felt good to ’tell’ someone about the ongoings, precursor to the diagnostics, the hospital, the treatment – just everything.

On Saturday, we took an 8 am walk in the McGovern Centennial Gardens. so huge, so lovely, perfect crisp morning. After, we went to a cafe for brunch. Small things, but hugely meaningful for Swati. After a relaxing afternoon, we went to MY favorite place, Vinology for a wine sampling evening. Dinner in the evening at Pondicheri, a fusion Indian restaurant. Indian flavors definitely 😃🙄 and that is all i will say. This is not meant to be a review 🙃

During the meal, we got a message from mom that Swati had begun feeling nauseous and was throwing up. Bala, Srinivas and I made the most of the dinner, but could not get home soon enough. Swati was in bed, drained by the nausea and gagging. It was hard to see. Imagining all kinds of reasons why the nausea returned.

All of us got into analysis mode – why the recurrence of Nausea after many days. One thing which stood out was that she did not eat anything in the period between the 10.30am brunch and 430pm. She had only medicines in her body, including steroids which ups metabolism. so….

We spent the rest of the weekend and Monday (Day 202) waiting for our Tuesday clinic visit with Dr. Shpall.

Tuesday, Nov 2 Day 203, d89

Labs and Genetics

Our first appointment was labs at the 2nd floor Main Diagnostic Center. The crowds! I wanted Swati to wait far away, outside so as to avoid crowds. It was a 45 minute wait before she was called. Uneventful – just a regular blood draw from her CVC.

Swati was also scheduled for her genetic testing procedure that morning. Based on an initial consult, we determined that it was beneficial to evaluate her for hereditary cancer syndrome due to our strong family history of breast cancer. They would test ~100 genes related to AML/MDS and hopefully find out more.

Just as as we got settled in for the procedure, a wave of nausea engulfed Swati and she was retching into the washbasin while I held her head. We asked the nurse to get her Zofran and wondered if we should wait or go ahead with the procedure. After the moment passed, Swati was ready.

Due to her transplant and the engraftment, they would not be able to use blood or saliva to test the genes. Instead they would go with a procedure called skin-punch biopsy. Sharon our nurse for the procedure applied Lidocaine to numb the area on the back of the top half of her arm. Before that she asked me if I was okay to stay in the room. I understood where she was coming from, but what does that even mean?!🤷🏼‍♀️ I am not going anywhere, I assured her. Also assuring her that I would not faint!🥺😱

Sharon applied Lidocaine ointment on Swati arm. She then used a sharp circular instrument, turning it clockwise and anti-clockwise to cut into the skin. She then used a forceps-shaped tweezer to extract the 4mm piece of skin tissue and dropped it into the test tube held by a second nurse, actually a coordinator for the Genetics department.

All this was happening behind and to be left of Swati but directly in my line of sight because I was standing by her side, holding her hand. I can still see, in my mind’s eye the twisting motion of Sharon’s hand – 😩😨 Thank god for the Lidocaine. I think I am forever traumatized with all my experiences over the past few months. Will need to debrief self at some point.

Lunch @ MD Anderson

We stopped at the waterfall cafe for lunch. A gluten free pizza for me and enchiladas for Swati. The only reason for the nausea this time seemingly appeared to be the gap between breakfast at 830am and the absence of food in her stomach through the morning. She was drinking coconut water during labs, clearly was not enough.


Finally we were at Dr. Shpall’s clinic. After meeting with the nurse for collecting vitals, one of her Fellows came and spent a good amount of time talking about her nausea and the cough. He left the room saying he would discuss with team 🤔
Shortly after, Dr. Shpall walked in saying, they were all confounded. Everything looking good, no specific reason for the nausea-

is it the antibiotic?
is it the the new medication she began to replace the every 21day Pentamidine?
is it the steroid taper, the lowest dose she can get?
is it not eating every two hours?

“Please dont do this“ Dr. Sphall said. She literally begged her to not confound the team because they had no answers!!!

Srinivas was on FaceTime with us and to his question on going home, Dr. Shpall was none too happy. She said she could not send us home with the persistent nausea. Which was a dampener. The team bounced ideas back and forth on what they action to take.

Stop the antibiotics?
stop the steroids?
stop the Atovaquone?

After some deliberation, asked Swati to stop her antibiotics and Atovaquone. Continue steroids, and made her promise to eat every 2 hours, strictly speaking.

Since then we have stayed the course. Swati’s stomach has settled down. Have not had a bout of nausea since. The intermittent cough is ascribed to the weather change that we are experiencing in houston. Pati is on the feeding train, on time with a vengeance. Between meals, she is plying Swati with Horlicks, fruit, Rava ganji (semolina porridge) and such. So far so good. We did this all the way to Day 206, d92, our Friday appointment.

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Day 206, d92

Hey everyone – not posted since the trip to the emergency Thursday Day 198, d84

But first things first –

😇Officially cleared to go home!!😇

So many ebbs and crests in the past days that we had a Friday consult today with Shpall. She called Dr. Ramakrishnan (in Austin!) and said she was handing over Swati to his care—– Sending a packet Swati’s records and labs to him. So heartened to hear Dr. R confess that he has been following Swati’s progress through their professional patient information systems. Of course the physical records are great too 😊

Promise to write again later today – much to convey ❤

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