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.

Survivorship

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.

Clinic

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?
or
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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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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