A Cultured Life…

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

Day 198, d84

Speak too soon?? 😫😳😱

6:59 pm cst

I am with Swati in the ER. This morning she woke up with a sore throat. With an abundance of caution, I sent the team a message on the portal. Dr Shpall nurse called me at 530pm asking me to take her to the emergency room.

Because she is on steroids, fevers are masked. They want her to be evaluated in the emergency. We are currently waiting for a room to be made available. Cleaning!!!

Pls pray if you read this. 😇

Update 741pm cst

The ER attending just came by for the initial exam. Labs, COVID etc

Update 8:07 pm

Blood drawn from CVC and from arm for the blood culture comparison. COVID test nasal swab. Did a rapid electrolytes test. Also resulted. All looks good.

Update 9:15 pm

ALL CLEAR in the labs and blood cultures. Waiting for COVID result and we get to go home!!!!

We got home around 1030pm. Devi’s grace is on us. She is thrilled to be home in bed.

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D194, d80

So much has come by since the last writing 😊 the smiley marks were I am going with this. 

  • Swati making us breakfast of bagels and fried eggs. Two sided was for my satisfaction – not sure about uncooked eggs.
  • Decisions about meals
  • First time wearing a bra in 190 days
  • First time Eye makeup for the in 193 days
  • A Saturday morning 5000-step walk

Friday Swati received a call from Dr. Shpall’s nurse We are confirmed for Clinic visits starting next Tuesday, 10/26. Dr. Shpall’s clinic is located in Stem Cell Transplant unit on the 8th floor of MD Anderson. The 8th floor lab will take over the blood draw and labs. I imagine that Dr. Shpall needs to be COMPLETELY certain before handing over Swati/us to Dr. Ramakrishnan. These twenty days will be as interesting as the previous 80 days🙃

The time continuum…..

Amma was recounting the early days when Swati was sick. Trying to put 2 and 2 together. It all fits so well, everything is crystal. 🥺 I must document those days too. Thankfully I do not have to rely on memory. Have tons of notes on my phone.
At the other end, Swati has begun looking to the future, the next months. What does she do about work? Does she go back remote? Will she have the energy to navigate her demanding job as a paralegal? Does she NEED to go back to work?
And school-
And a NY residency…..

Many questions abound. Grateful to the universe and all your prayers that she has arrived at this point. I am in awe of her resilience, her perseverance. When I am in the bathroom applying the shower patch on her central line, I see her cool, deliberate gaze travel her body – scarred by surgery and chemo. I am afraid to meet her eyes, but i realized one day, that I do her a disservice. If she can look at herself, I should not avert my eyes. She is my beautiful baby, always. Since then, we explore the body together. What can we do with this body that contains the flesh and blood of a barely-born child?

It seems to me that all that has been written about the effects of chemotherapy is till too little. We saw Swati’s skin darken after the transplant and it was never clear if it was the chemo or the transplant or the many drugs that she is on. In the past few days at home, her original skin was visible under the layers of dark. I thought the skin is sloughing off. A couple of days ago, we found that we could rub it off!!! Perhaps, all she needs is a loofah?!🙄😱 Dont want the skin to break – we are slathering almond oil.

The next challenge (in my mind) is stregth training and exercise. Swati needs to regain her muscle mass. When you are 80 days old, you have time in front of you, right?🙃

This weekend, two of Swati’s friends from Bryn Mawr came from Philly. They have been spending time together – going to the park, checking out a vegan place and generally being there for her. Swati is blessed to have the community around her and through her, I. One of the girls is Teju’s niece. Somewhere I have written about Teju – back in Austin, she has brought me enough food to feed an army, many many times. She was just ” Swat’s friend’s aunt” at that time. Today, I think of her as angel. How many such people have held me up? enveloped me in their comforting embrace?

Too emotional to continue writing. Please, never underestimate the power of community 💙

Thanks for reading 😇

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Day 190, d76

Swati has graduated to Dr. Shpall’s clinic!! She had her last Magnesium infusion yesterday and given the way her numbers are trending, Dr. Shpall feels comfortable see her at the clinic on Tuesdays. So we are dow to once a week visits. YAAAAYYYYYYYY😇

What an incredible feeling this is is! This was a great way to end the days visit after all the stress during labs. Yesterday, the nurse had 11 tubes and the 10ml bottle lined up to collect Swati’s blood. After collecting eight tubes, the blood slowed down to barely a trickle. She flushed the lumen and tried. Did not work.
By then she was already asking swati to move her heed left and then right, to cough, to raise her feet, and to strestch her shoulders and arms. I think this is meant to agitate the heart muscles 🤔

None of these worked.

She asked another nurse to bring a chair which would fully recline and Swati’s could lay flat. By then she collected half a vial and swati did not want to waste her blood, But the half-filled tube hanging from the lumen stopped drawing any more. The pressurized collection tube did not like the delay caused by switching chairs. In the medical trash the tube went😱🥺

She flushed again and the flow resumed. I was sitting and then standing at the outlines of that 3-walled cubicle, signaling to Swati to focus on her breathing. If I could give my blood, I would. But then I would do anything to spare her these 200 or so days.

10th Floor ATC

In any case, we walked out of the 2nd floor Diagnostic clinic and I had Swati drink some Capri Sun sitting on a bench. She was craving Pizza and so was I. It’s like when I am at the hospital, my gluten-free, low-carb diet is out of the 18th floor window🙃 Came back t0 10th floor ATC with pizza, an asian bowl and a veggie plate for me. Still more waiting since we did not have a room yet.

Once inside, Swati was hooked up to Magnesium and IV fluids and we settled to eat our pizza. And Dr. Shpall was in! Asked her two questions about how she was feeling and how her appetite was and proclaimed ”SHE WAS A STAR!!” She as ready to see Swati at clinic, without needing the regular maintenance and infusions that is provided at the ATC

Swati went through questions which I had faithfully compiled in my notes app – around the taper effects (What can she expect), vaccinations, and Ovaries.

My baby will be vaccinated 🥰

Covid-29 vaccine and the Flu vaccine at 90 days
Baby vaccinations begin at six months
Will schedule another consult with Oncofertility

Peeking ahead….

Yesterday was a milestone day for Swati, for us. She and Ansh went out to Dinner – a welcome change and I was so so happy💜 Here’s hoping the steroid taper is kind on her.😇

Thanks for reading!


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Day 187, d73

Hello, Hello!
The biopsy results are in – Her 4th!
“ Negative for measurable residual Acute myeloid Leukemia “ in Swati’s bone marrow. This was a Bone Marrow aspiration – read here. The first analysis of the fluid in the marrow is reassuring. From here there will be be further analysis by flow cytometry ( this is at the molecular and gene level. So complicated – I go deep into NIH archives and PubMed articles to understand). We will celebrate and give thanks for this. 😇

Swati was excited for yesterday. She and Ansh had planned a day out and I was grateful that we were beginning to see glimpses of Swati. Just before leaving around 1pm, the nausea reared its ugly head and my heart sank. But I (and she!) were determined to keep this a normal day. So she did throw up and go on her way 🙃 I did something else – I pulled Ansh aside and told him to watch out for my baby😃 also asked him to carry her bag because it was heavy. Now it had a throw-bag, extra water, ginger chews, etc. She had a lovely day.

🙂 😦

I must tell you what I did today – From our kitchen, one can glimpse into the bedroom. I saw rush (walk quickly!) to the bathroom. A month ago, I would rush in, after a knock on the door. Today, I almost knocked but stopped myself. I stood there 30 seconds, straining to listen. Everything was awfully quiet. Then I began looking at the bottom, towards the gap between the door and floor. No shadows. Then I lay on the floor, trying to peer in through the gap, trying to discern any sound or movement. After a minute, I could hear some sounds from her phone. At that point, I left the room.

Who am I? What have I become?

The coming week

Tuesday we begin tapering Swati’s steroids from 30 mg to 20 mg for the next seven days. The team is watching to see what the taper will do to her Graft v Host symptoms. I am praying that we have arrested them and the other counts continue the upward trend.

Amidst this, we need to think about logistics. Notice on our apartment, packing, the drive itself. One car, two cars?? Is the 100 days negotiable? 95 days? Questions abound.
In anticipation of the nebulousness, Srinivas has gone to Austin today with a car load of stuff. We still have many things 🤷🏼‍♀️🙃I am trying resolutely, to banish questions from my mind.

You made my day!

Earlier today, I got a call from my co-worker. She read this blog only last night, having resolutely stayed away all this while. She told me that she was scared to read, scarred by memories of her grand mother who died to cancer when she was a child. She stayed up late reading, and was moved to tears, by my strength. What also made her cry was that she felt my pain, as a mother herself to two young girls.
This response made me cry too.

My tears have been few and far in between.

I have cried when I have brought her home from the hospital.
I have cried more in the hallway at St. David’s in Austin that I have at MD Anderson in Houston
I have cried one morning in the family room at MD Anderson – in a phone call with my friend in Portugal
But I cry when I hear first-hand from people, that they feel my pain, they know/dont know what I go through
She also said that she ended up googling words to understand better. That made us both laugh.

I am grateful to all of you, my readers! Some comment, some text, some WhatsApp, some write to my mom, some dont say anything. But I know that I am surrounded by diving grace and the love and generosity of countless people – I can never repay but I hope my gratitude shines through these words.

Please continue to pray. It uplifts me and gives me strength. I hope I am putting something positive out there and will pay it forward in my lifetime

😇💜

I am very grateful for your support. Thank you very much. 💕😇


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Day 184, d70

The procedure yesterday went well and Swati did well. This was a bone marrow aspiration, not a bone marrow biopsy. In an aspiration, fluid from the marrow is suctioned out. In a biopsy, a piece of the bone marrow is scraped up for analysis. I wonder why they don’t clarify this up front 🤔

From the time they wheeled her in to when they called me to recovery was all of 37 mins. She has been craving Shake Shack burger and Srinivas picked it up on the way to the hospital to get us. So she could eat as soon as she came home.

We are still waiting on the results.

Today was the first day in a long time that Swati went into the kitchen to make herself lunch – Maggi!! She had to search her way around this alien kitchen😃 We were exhilarated to see her – dad, my mom and I.

This evening, Srinivas took her to Local market her in Houston for some fries and a fall noodle dish. I think he was more excited that her😃

Tomorrow is another clinic visit – the usual blood draws and perhaps magnesium. She had a consult with the Adolescent and Young Adult center (AYA) and i get the impression it went well. The take away was for her to look to future and not live day to day. She will tell me more when she is ready I am sure.

Today she wanted to go down to the business center and Srinivas asked me if I was the helicopter mom.😱🥰 You bet I am
I gathered my work computer and went down too. Ensured that she did not touch elevator buttons and door handles. I dont think it is excessive, Do you?

Will update more as we get results.

As ever, thanks for reading

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Day 183, d69

And just like that we are past the 6-month mark since diagnosis 😔😇 Long road this has been..

We are back at Non OR anesthesia department at MD Anderson. Swati is scheduled to have a biopsy today- her 4th😒 Thank goodness the appointment is for 930am. She is NPO since last evening dinner and is distracting herself with culinary TikTok💜

Will update as the day goes by.

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Day 179, d65

Hey everyone, Swati has grade 1 GVH in her Duodenum, stomach and sigmoid colon and rectum. There are no viral inclusions, which is good news. Earlier in the week, the doctor started her on steroids, very unwillingly. But we had reached a point where the nausea was not resolving on its own. The 43-day Steroid schedule includes a taper plan. We are hoping that this does not impact her overall recovery of counts. In this week, we have not seen anything amiss and we continue to be hopeful.

What a change this week has seen! So many firsts in a long time!!

On Thursday, Aditi, Tanya and Swati went out to pick up Torchy’s tacos for lunch. I did not care if Swati did not eat a taco; just the fact that she had the energy to go along for the ride was a huge deal for us.
That evening, we went out to dinner, our first since March. 😇 Made sure we had outdoor seating, fairly spaced out seating.
Told Pati that the kitchen is closed for the day!!😃

It has been such a joy to have Aditi spend a few days in Houston. I am so grateful that she carves out the time from work and her responsibilities to be here with us. This afternoon, Aditi and I got to spend some alone time. Went to a place called Vinology. Wine tasting and chit chat 😍💜

Oh, on Friday evening our apartment lost power. Nobody, including the power company could figure out what was wrong. The owner offered us another apartment for the night, a couple of floors down. So much better than a hotel!!

Swati has a routine visit on Tuesday and another bone marrow biopsy on Wednesday. I am trying not to think too much, just going through the motions, one day at a time. As October winds down, the countdown to Thanksgiving starts and I know Swati wants to go home to Austin for Thanksgiving. I am trying to temper her expectations, and not be fixated on artificial deadlines. We have come a long way and will do whatever is needed, however long that takes. Please continue to pray for her.

Navaratri 2021

The week marks the beginning of Navaratri. I pray to Devi to grant me divine powers to help Swati. I have this image of Goddess Chamundi slaying Mahishasura. I am no goddess but hope to slay the demon 😇 Wednesday, went my neighborhood barbershop to get my hair cut. The people in the store held hands and prayed for Swati. I was moved to tears. On this divine day, prayers to christ in a barbershop. I am convinced the universe is with me, and you, my dear reader 💜

Thanks for reading!!

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Day 176, d62 

What a dramatic change since the Endoscopy on Monday !
Read on for details😊

Oh Monday was so stressful 😰They called us in earlier than scheduled which was a good thing but really it was only 30 mintues earlier and did not make a huge dent in the overall time spent. But who is looking at the clock? One caregiver is allowed to accompany the patient but in Swati’s case the lady at the front desk said “You can accompany her since she is a minor.” Swati and I looked at each other wondering the same thing – What the heck!
We are in and getting settled and changed and the doctor performing the procedure walked in saying “oh your mother has been calling us about your food.” Umm, that’s me. Sure, they remember me.

Because I push back and ask questions. They can have the last word, but I will be heard.

Originally, we were scheduled for an 8 am procedure. Then it was moved to 3 pm end of day slot because swati was an Isolation patient. Remember VRE? But she was also NPO from midnight Sunday, which meant she would not be able to eat till 5 pm Monday. And neither would she be able to take her meds. Need fluids for that. Pages and pages of instructions were included in MyChart but I called the department and began asking some eating times. This was Thursday or Friday before. They called me back Friday evening to say that Swati could have a light breakfast before 7 am and the last drink (clear fluids only) before 11 am. This definitely eased my mind because now she would not be empty. Though I appreciate the importance of being empty for a camera going into your stomach and beyond.

Coming back to the doctor – We chatted for a few minutes and I was properly respectful in my questions😊 I was well trained. My cousin, Haritha is a GI specialist and I called him as soon as I heard that Swati needed this procedure. He explained it all, told me all the questions I should ask. Somethin he said struck me, which I think applies to all, but more so doctors maybe because they aer so close to God. ‘Doctors are proud people you know, so frame everything like a a question. Don’t offend them.” 😊😊 She answered all of my and Swati’s questions and we were well prepared going in. They wheeled her in and I went back to the waiting room.

Made myself comfortable and had a smoothie carried from home – one for Swati and one for me. The thing about hospitals – strange/weird/uncomfortable to admit – so hungry. Once I are settled into the waiting mode, I want to eat ☹

Within 45 minutes of settling down in the waitin room, I heard my name called out. Swati was in recovery! She did well through the procedure and was breathing on her own through out the process. My baby was lying on a side, swaddled in blankets and a shiny cap on top of her chemo cap, fast asleep. I moved the chair around so I was in line of her vision as soon as she opened her eyes. I saw a tear glisten in the corner of her eye wanted to know if she felt pain. The nurse reassured me that she had a bout of coughing. My heart broke and I took my scarf and wiped it away. Not too much later she opened her eyes, saw me and went back to sleep, working through the anesthesia. The doctor came back to see us and told us, visually everything is fine. She encouraged Swati to go back to her regular diet. 🥺 How? Nothing stays, I thought. She asked swati what she was craving, and Swati replied “Maggie”. One Maggi coming right up at home!

All we do now is wait for the pathology reports on the biopsy.

Tuesday, October 5* Day 177, d61

Yesterday, Tuesday, we had our regular trip to the ATC. I went with Swati because I wanted to make sure she was heard. Everytime they ask Swati how she is or how she is doing, she says “okay”, or ‘good”, all in small voice. Facial expressions are lost in the masked world and all people don’t know to read eyes. So I made a deal with Swati. For today, she is going to look at her mom when the team asks her a question. I made sure that I conveyed her desperation, her agony after heaving over the bathroom sink after the smallest meal. Swati is now taking a low-dose steroids. They believe this is restricted to the Upper GI and much as they wished they did not have to, she has suffered enough. We also have a taper plan in place. The doctor also wanted a chest xray to check for pneumonia. She does seem congested with all the heaving and coughing.

For the first time, we decided to take the wheel chair to Mays clinic for xray. She was so so tired – the sedation effects las 24 hours they said. We also picked up the meds and she had the smoothie before.

The miracle of steroids

By the time we got home, the sterioids had kicked I feel. She had a small bowl of Maggi and was alert and chatty all evening.

I, on the other hand, not so.

Staying in the hospital has a different vibe than these day trips. Two days going back and forth, I was exhausted. I went to bed immediately after dinner. Needed the sleep 😊

Oh and I forgot to say that a dear friend Tanya, is visiting from Chicao. Covid tested before-Houston, in Houston.

And today, Aditi is coming to spend a few days before a work trip to San Francisco.

Thankful for many blessings and thank you for reading

ps: please excuse the typos – have a sticky ’g’ key and I have yet to figure out how to link to my previous post about VRE🤔

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Day 174, d60

Nothing has changed since my last post. In a few hours Swati will have the Endoscopy performed. I cannot bring myself to say “I am sick of this”, “I am so tired”. Where will Swati go then? And what must she be going through? Last night was the worst – in a while☹ the cough gave no respite and I don’t know how much sleep she got. 

This procedure will look for:-
1- Candidiasis
2- Ulceritis
3- Esophagitis
4- Gastritis – erosive gastritis, not ulcers yet but if left untreated could become
and of course

5-GVH – this will be diagnostic, by pathology. Not visible during the procedure.

Woke her up at 630 so could drink an Ensure (light breakfast before 7 am) and then gave her some Gatorade at 1030 (within the 11am deadline)

Will update in a few hours.

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Day 174, d60 ***Updated***

Nothing has changed my last post. In a few hours Swati will have the Endoscopy performed. I cannot bring myself to say “I am sick of this”, “I am so tired”. Where will Swati go then? And what must she be going through? Last night was the worst – in a while☹ the cough gave no respite and I don’t know how much sleep she got.

This procedure will look for all of the below-

1- Candidiasis

2- Ulceritis

3- Esophagitis

4- Gastritis – erosive gastritis, not ulcers yet but if left untreated could become.

5- GVH – microscopic, wbc, diagnostic

Woke her up at 630 so could drink an Ensure (light breakfast before 7 am) and then gave her some Gatorade at 1030 (within the 11am deadline)

Will update in a few hours.

******Update 10/5******

Exhausted to update yesterday but here are some early notes – visual findings from the scope are good. No issues. Now we wait for the pathology reports of the samples taken, which will be at the end of the week. Swati and I are at the ATC for the regular Tuesday visit with Dr Shpall. Which means we will be here for a good part of the day. Last night continued in the same fashion- coughing and nausea. Need to find a solution, so she can eat!!

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