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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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 168, d53

Another day at MD Anderson

Today I accompanied Swati for her hospital appointment. Though the MyChart had a 7.15a time, Swati was determined to reduce her hospital time because she would not see Dr. Shpall till at least 2pm. Srinivas drove us to the hospital at about 10 am; a change of roles, because since discharge, he has been taking her to her appointments 🧡

First stop was labs. Today they drew 12 tubes of blood + one 10 ml bottle for blood culture. 🩸💉😱 The phlebotomist was a tad suprised too I think and she let me look at the order screen. I sat listening to the labels print – and surreptitious glancing at Swati in between tubes. Another time when I wish I could look into Swati’s head and see what goes on.

We finished labs and went back outside, waiting to be called for the infusion. But before that we need to gets vitals checked. This time, here hear-rate was 103 and blood pressure was higher than normal. Now I know that her mind was racing during labs😢

Room with a view

Today, I requested that they put us in a room with a window. Not that swati cares 🤷🏼‍♀️I will post a picture here and hope that Swati will someday choose to read this blog. Swati introduced me to the nurse and she said she has spoken with me earlier. I have called the ATC so many times we were both trying to remember when we spoke. And then it clicked — This was during dressing change when I was trying to make sure the nurse would use an adhesive remover on Swati’s sensitive skin. 😢

They began the Magnesium infusion and the Caspofungin that I took from home. By about 1pm the nausea came back. There has been no respite for the cough and nausea over the past 15 days.

I hate what it does to Swati. I picture the nausea as a six headed beast with 12 legs, wrapped around Swati and squeezing every bit positive that she has in her. I think this image of Scylla has stuck in my head ever since I read “Circe” by Madeline Miller. I need to summon all my powers to make sure Swati gets through this. What makes the nausea worse is the waiting for the team, the beeping, and just everything – as much as we are in a comfortable place, it is still a hospital and Swati has to, still deal with the God-awful cancer. Swati asked for an anti-nausea medication and the nurse said that the team was going to come see her soon, and then the medicine. I let some time go by and then went up and asked them to give her the medicine; No need to link it to the Nurse practitioner visit. They still had to put the order in and I am glad that happened fairly quickly.

We spent the next hour wrapped in ourselves – Swati on TikTok and me on my work computer. Earlie in the day, we saw a new medication hit our phones, a pill replacement for the Caspofungin. It was only later, rather now that we processed this and high-fived. Yesterday was the last home infusion!! Swati had switched over to the tablet form of the anti-fungal. No more home infusions!!

How did I do this??

I had survived the most excruciatingly stressful moments of my life. I am grateful for the powers that watch over me, while I literally hold my baby’s life in my hands. As long as she has the lines, I will only need to flush them daily. Did I imagine that I would be so blasé about this??

The doctor is in…

Dr Shpall came, sat on Swati’s bed and held her hands. She performed a thorough physical examination of Swati and put in an order for a chest x-ray. To rule out anything with the lungs. Since the nausea is persisting, she wants to request an Upper Gastrointestinal Endoscopy. She does not want to prescribe steroids unless she know what she is dealing with.
Dr. Shpall said the scope appointment could be essier if she were an inpatient. would she like to be admitted??🥺Swati gave an emphatic ”no” and said she does not mind waiting for the appointment. Those five seconds my mind went topsy turvy🤯Totally pivoted my mind from the issue at hand – Graft v/s Host (GVH)

We need to rule out if the nausea could be a GVH reaction in the GI track. I am going to refrain from Googling any on this. I believe Dr. Shpall when she says that this is easily fixed.
We have an appointment for monday, October 4th. but first a covid test on the saturday before.

x-ray @ Mays Clinic

While waiting for the shuttle to the Mays clinic, we ran into Dr. Q from our inpatient days. I have been thinking about him and was so, so happy to see him. And he, us! Enquired of Swati’s numbers and said much of the same things about her cough and nausea. “This is easily fixable” – Dr. Q

The x-ray did not even take as long as it took to get there!! We texted Srinivas to say we were done and headed back to the third floor gazebo waiting area. Just as we sat, I realized that I forgot to pick up her new meds. Ran back to 10th floor elevator C for it.

All in a day’s work

It was 5pm by the time we got home and 10:15 pm as I write this. Tomorrow, I am going to look over the labs from today. I know that they ran a few ones extra – Need to figure what those are for.

Thanks for reading

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Day 166, d51

So, yesterday was not all that I made it out to be.

Swati has developed a cough over the last couple of weeks. As with all coughs, the nights are the worst and we are recommended a cough syrup. Yesterday evening, she was unable to keep her afternoon meds down. Called the clinic line and spoke to Dr. Shpall. She suggested that we repeat a couple of meds – the more important ones (GVHD-specific).

Unfortunately, she threw that up as well.

Called the doctor again- Asked if we allowed enough time from her anti-nausea meds. But we were only two hours out and I could not give her another dose. Dr. Shpall said to give her a break and only go for the night time meds. but if she was unable to keep anything down, we should take her to emergency.

Shortly after the call, gave her some watermelon. Barely 10 minutes passed before she was gagging and heaving at the sink😰 Now i was truly scared because this was three times in less than three hours. and I was mentally preparing myself for the ER visit.

Following the doctor’s orders, we gave Swati Zofran, an anti nausea med at 9 pm, followed by her nighttime meds at 930p with some coconut water. And prayed that it stays in. Pati (my mom) sat by her bed and gave Swati some Reiki healing. We sat up till 11pm, waiting and hanging on to every rustle of her sheets. Not that any of us could have slept.

The cough was incessant last night. She must be so tired. Hope Swati has a relatively peaceful day today. Morning meds are done, Caspofungin infusion this afternoon.

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Day 165, d50

Relearning my number line

Do you remember the number line lesson in your 1st or 2nd grade class? I have
downloaded a few apps onto my iPhone to count the days. I have also manually counted the days. All to arrive at the 50-day halfway point in Swati’s transplant journey. 😇🧡💙

Each day has been fraught with emotion, together with the humdrum living in our Houston apartment. There is a part of me, coiled tightly, waiting to spring into action. The roll on emptied from the hospital still sits outside the bedroom door, ready to be packed at shot notice. Part of me does not want to jinx by moving it into a closet.

Yesterday, sent all the home infusion meds with Swati. Having them in the refrigerator was just off (for me!). Last week, I had to do a home infusion after she came home and I am like, 🙄🤔 They came back with the Caspofungin for home but for that day, she got it in the hospital. Mission accomplished 🙃

One time, after 30 mins Swati tells me the medicine ball is not shrinking. 😱 That was so stressful – but nothing to it. I had to glove back on, unplug it, repeat the flush and plug it back. Dont know what I might have done differently. I think that was the time I forgot the first flush🤫 and hence had to redo.

Another time, I could not flush one of the lumens. And the first thing I learnt in class was to NOT force the flush. The next day, we took an appointment with Vascular access for them to flush. There was nothing wrong with it, i guess it is experience, knowing when and how much pressure too apply. Safe to say I have learnt a bit more than I bargained for. 😓

Next week, Tuesday we meet Dr. Shpall. If she green lights, we will move to her clinic for follow up. I think those appointments are simply meet and check vitals and such, whereas at the ATC where we go for appointments now, they are equipped to administer blood products and anything else that Swati needs.

If you are able, please donate blood at your local blood bank. It will save someone’s life. Swati has received so much from so many people, strangers – we would not be here otherwise. I am indebted to them all. If you are in the Houston area, and anywhere close to MD Anderson, please consider a donation in her name.

Thanks, Anuradha

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Day 162, d47

Swati is doing well, albeit with one tiny hiccup since the last time I posted 😊

Monday, we went to the hospital even though we did not have an appointment. The previous evening, Swati was feeling a bit “off”. Heavy in the head, a headache, little shaky, and just ‘different’ from other days. The evening before (Saturday) she had been feeling the same and gave her a Tramadol. Since her symptoms were similar I called the afterhours line. The doctor that called back was none other than Dr. Shpall our transplant doctor!

She recommended that we take her to emergency if she ‘does not feel well’. Or we should take her in first thing Monday morning. Given the way Insurance works her, I could sense that Swati was unwilling for an ER trip. Srinivas and I were both saying we would take her if she said the word. After all, we are dealing with so many unknowns, who knows?

This was also the evening we had decided to watch ‘VEER ZAARA’ with Ansh, who was seeing it for the first time 😊 In large part the distraction helped and she managed to eat some dinner as well. WE got through the evening and I began calling the ATC from about 645a on Monday morning. Thankfully everything looked good. There was not reason to be worried. 

It appears that Swati’s system takes a couple of days to get over anything out of the ordinary. This clicked! On Friday evening, Swati and Ansh went out together❤ This was a big step for all of us I think.  Can only imagine what goes on in my child head ☹ I say this a lot, don’t I? If anyone has a crystal ball, please send it my way.

Today is my six monthly infusion. I will be away for around six hours at least. Will do Swati’s infusion after I am back. We are just doing the Caspfungin, which takes around 75 -90 mins. We are sitting with quite a supply of this and the Magnesium but not doing the magnesium at home. 

Thank you everyone for continuing to send prayers and good wishes, for holding Swati in your thoughts.

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Day 158, d43

A detour…

Scrolling through my Notes app on my phone, I came across the ’job aid’ I had put together for Aditi, when we swapped Caregiver roles for Swati at MD Anderson. The details – ooof!! made me laugh and cry all at the same time.

Aditi did a phenomenal job in stressful times. She stepped in at day #5, just as we began to see the reactions to the transplant. I don’t think it was easy. You can read my previous posts for those days.

Because I knew we were going to be a tag team, I began writing things down for her. did not want to leave anything to chance and also recognizing that things move quickly. Credit to Aditi – she did not question me – At all!! 🥰 That rare time when “Mom is right”

Job aid- MDA 

  • Get  ready early- ish
  • Vitals 4am, 6 am , and regularly,
  • If they come for vitals and you have ordered breakfast, ask the nurse to come back when breakfast is here so she can get a few more minutes of rest. Just did this. Nicely!!
  • Weight before breakfast. 
  • Sometimes the med bags (IV) tend to get left on the pole long after completion. Gently nudge the nurses to remove. When they remove the bag the tubing will also go psychologically, this helps not overwhelm swati and us too. 
  • 7 am shift change – introduction sometimes, sometimes not 
  • Growth factor shot every evening. Walk over to the other side and hold hands 
  • M – W – F. Blood draws to check tacro levels and recalibrate 
  • Contact VRE –  pls wear the gown at all times. I have been wearing on and off. Definitely wearing to hug her   

Hospital wipes – use liberally on handles and surfaces when ever you can. Housekeeping Luna will come. I make room for her. Move the table around. Shoes off floor. She does the undersides of couch and beds for me. 💕

Basically I don’t leave Swati alone, except if talking to friends or Ansh. 🤗  to give her space. 

Laundry is three separate trips. Long enough cycle. 

—Elevator down to 11, walk around through the family room to another set of elevators, go down to 6. One side marked Parlor.  the other side is laundry. Door in right 

—Carry soap and dryer sheets 

—Add clothes, insert card, push button colors. 

Note- Top left first dryer does not work. 

Since I am home, I can pick up clothes. Will talk 

FOOD

Most important activity in the day😂

Order early enough; will take an hour for service. 

  • You can order in 3s at a time 
  • No restriction on time between orders 
  • Fist couple of meals we paid for mine. Then I have preferred many of the sides for a variety. That way swati has a choice also and we can sample more 
  • Breakfast
    • two boiled eggs and 2 slices avocado standard 
    • Swati likes the breakfast tacos, waffles, pancakes. 
    • If you order two entrees, pay for one as guest.
    • Swati might not want to think of breakfast at night so I don’t know what she wants the next morning 
    • For choice I order one breakfast taco and half a waffle. 
      • 1 breakfast taco & 1 pancake 
    • Order drinks even if you don’t need immediately, to keep in fridge- vanilla almond milk, coke, orange juice 
    • Some on phone will prompt you. For eg French vanilla creamer never entered my mind!!
    • You have to specify EVERYTHING- creamer, Half and half, French vanilla creamer, sugar, ketchup, syrup, butter,  cream cheese, tartar sauce, salsa, all condiments. Two of each at least. Breakfast syrup – 3
    • Salsa MUST with eggs (2)
    • They repeat the order but I forget and then I call back. Mostly,  they will rush it to me 😇 because i am nice 😊 
    • Will send today’s breakfast list 
  • Lunch is the same way
    • Swati loves the fettuccine Alfredo 
    • Spinach asparagus 
    • The baked sweet potato is very good. Eating it 4 days in a row😱
    • Love the garden veg soup. With cottage cheese. Closest to plain yoghurt. With crackers and goldfish.  Ask for as many   
  • Dinner is from home ! 
  • If you want snacks, order by 230 so will have an appetite for dinner 
  • Dessert: but of course!!!

All served in disposable including tray because we are in Isolation room 

This status till discharge 😧

Exercises 

Walking – she is very good at motivating herself to walk. Just remind her at regular intervals. She knows her body. 

Collect the M&M stickers (Movement & Motivation)

15 and you get a prize. 🏆

Breathing – 10 breaths /hour but she has latched on to Nurse Ancy who said 3-4 times a day

😂

Encourage her to find a Middle 

Skin care after bath 

Oral care: the mouth wash bottles are short supply.  Ensure that you inform the nurses 3-4 days before you run out. 

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Day 153, d39

Biopsy results are in!!

Encouraging and a relief!!
“Negative for measurable residual acute myeloid leukemia by flow cytometry”

For today, I do not need to hear anything else. 😇

This morning, just as I was preparing myself for the daily infusion, Srinivas received a call from the hospital rescheduling our appointment to today. Parts of Texas, particularly Houston is in the path of tropical storm Nicholas and MD Anderson is moving their appointments.

Swati also met Dr. Shpall and she continues to be happy with Swati’s progress. She has told Swati that she can begin coming to the clinic when she starts to eat and drink as well as she used to. Swati says she needs to ’graze’ 6-8 times a day, small meals.

I can see small changes, day by day. She stays up a bit longer, picks up her own cups and plates, wants to talk longer than before. We are happy and grateful.

Srinivas is of course two steps ahead. He wonders if we can take Swati home sooner than 100 days 😂 I am more cautious – dont want to think more than the next day.

Till I write again – See y’all in a bit!

Anuradha

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Day 151, d38

Yesterday Friday swati had her biopsy. We had a really really early start. Left home  at 6 am. We were confused because both our phones had messages asking us to get labs done ( blood drawn) before the biopsy. Though the appointments were scheduled differently. First biopsy, then labs , then infusion. 

I called the nurse from the car and confirmed that we were going to labs first. 

For all their world class reputation, MD Anderaon can be quite un coordinated. Many times I have felt that they are quite clueless.  Who I am talking about varies – it is a sense I get through my interactions.  

This is Swati’s third biopsy and she was sanguine about it. The anesthesiologist was late!!  Made sure that they were not starting anything without him!!

The waiting room appeared small for six people and I decided to stand in the connecting hallway so I could see her wheeled into the post op recovery room. It was not too long after that I saw her tiny figure being wheeled out. recognized her jacket on the sheet. She was out and I was thankful which meant that she felt no pain. 

I know they would not let me follow them. I checked with the nurse if I could already go in. A few minutes later the nurse in the Room beckoned me. I positioned myself by her head so she could see me as soon as she opened her eyes. 

The nurse monitored swati for 45 minutes. It was quite uneventful. I wanted swati to drink something because she was NPO since last nights dinner. She had a Boost and then the transport was here to take us to the ATC. 

The gentlemen with the wheelchair was one who had transported swati at other times during our stay. It is just happy to see a familiar face and they are endlessly kind. Juan enquired how Ms Shastry was doing and was genuinely happy that she had been discharged last month. 

He dropped us off at the ATC and it was time for her infusion meds. The same that I am doing at home when she is not here. 

Thankfully swati has borne this well and has not expressed any discomfort. But then she never does. 🥺 

Saturday, September 11

Today, I was a little bit more adept in administering her medication. I don’t know how they do it but getting gloves over wet hands is hard. At the ATC I followed the steps very closely. The unwrapping of the syringe, the tearing open the alcohol wipes, the manner is holding the syringes between tire fingers so they don’t touch any surface. 

I also learnt that the third grey lumen is the smallest and the tightest to flush. Needs a little more pressure. Today I had to trust my instinct and push a little bit harder than the red and the white lumens

Can’t believe it! I have come a long way. 

The nausea is less but still comes back with a vengeance. However, Swati is getting around a little bit more than last week. Sitting with us and watching TV. Also trying to eat a regular meal. Please continue to hold her in your hearts.

Thanks for reading!!

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Day 149, d35

Swati had a day off today🙃 sort of -— –

When they returned from clinic yesterday, they had a shopping bag filled with golden colored balls. These were medications for home infusion. I was completely, mentally unprepared to administer medicines. I had prepared myself to flush the lines. But administering was 😱😱 Read about my CVAD class here.

The medicine were stored in the refrigerator and we were to keep them outside for five hours before administering them. But we did not remember to pull them out till 8 am in the morning, as a result of which we could only begin at 1pm.

I was stressed out but CALM. Channeled all my energies towards recollecting every little move and action I had absorbed during our hospital stay. I remembered the ten second sanitizing steps, the push-pause, push-pause cadence to push the saline, read the instructions for the home infusion pump and that was it. I called the clinic inn the morning to check on the air bubble in the line, should it occur. In the hospital, the IV pump would let off warning beeps if it encountered an air bubble in the line. This is a pressurized packet, hence no air bubble.

The waiting to see the golden balls deflate was excruciating. But slowly and surely, the anti-fungal bag began to deflate and I knew i had gotten this right. The magnesium infused over five hours and it was 6 pm by the time I was able to untether her.

I was unable to flush the third lumen. The syringe encountered some resistance and we are taught not to force it. Called the on call nurse to ask if we need to take Swati to the clinic. We can take her in tomorrow when we are there.

We learnt something quite interesting when we met Dr. Shpall earlier this week. The post stem cell transplant report shows both donor cells in an 80-20 ratio. Will be a few more weeks before one will totally take over🧫🧫 How cool is this??

Tomorrow is a big day – Swati will undergo another bone marrow biopsy under sedation, followed by regular blood work and maintenance infusion.

🧫

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Day 146, d32

Nausea and the 🧫

I think we may have tamed the nausea a bit!! Thanks to my dear cousin Sharada’s brilliant idea – An acupressure wrist band found here https://www.sea-band.com/product/adult-pack/

Yesterday Srinivas and I went grocery shopping and to the drugstore in search of the wristband. I spent the day reading tutorial on acupressure and realized I might have a bit of trouble locating these pressure points. I struggle to feel shampoos and conditioners with my hands, how am i ever going to identify a tendon or muscle? My overly sensitive hands cannot perform sensitive tasks🤫

I was simply happy to find these bands. I am just about willing to try anything to get Swati some relief. From the drug store we went to get foods that Swati MIGHT eat. Nausea-friendly foods. Ritz crackers, water crackers, grapes and one of each – ramen, noodles, Mac and cheese. Who know what might strike her fancy? Something must stay down?

The clinic visits have been fairly uniform. The labs are reporting counts in range for Day 30-ish. Swati has not needed any blood or platelets over the past three days. And her ANC is now 1.38

Tomorrow’s appointment is a big one 🙃 We will meet Dr. Shpall who heads our transplant team. We will be meeting her for the first time, since being admitted to the hospital, since the transplant, since discharge. Pretty excited 🤩 Srinivas will go with Swati and will FaceTime me into the appointment.

See you after!

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Day 144, d30

The Tacrolimus levels did not match – unfortunately 😰 The central line reading registered normal to high but the vein reading was low. They have increased the Tacrolimus evening dose.

Today after the clinic visit Swati was sad and she cried. I have asked her to pinpoint one reason every time she cries, so we have something tangible to address. Last few times, it is tiredness. I have heard from others of this whole body exhaustion but honestly don’t know how to resolve. I do know that what Swati is going through calls for great mental strength and tenacity.

I draw on my marathon training experiences to walk with her. I believe that you run in your mind and not your legs. When I began training, I could not imagine running 42 kms. But as I journeyed the miles and months, I came to know that the human body can be amazing, IS amazing- IF the mind so chooses. This does not wish away the physical agony, but how do you get up the next morning at 4am and put on the running shoes again?

Trying to nudge Swati along in that direction. She is bigger than this. She is a fighter and she know what she has endured and come out stronger for this. Advice? Suggestions?

The nausea is DEBILITATING. No let up. Also, lately it does not stop with the nausea. She is throwing up too.She is a worried that the nausea is not responding to the meds. Between three medications, the Pharmacist on our team has given us the outlines around which we can color.

Tomorrow is another day.

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Day 143, d29

Back- where I belong! 🌈💕

In the clinic with Swati today. She is getting magnesium , Caspofungin the anti viral and are waiting to see why others after the labs are completely in.

During yesterday’s visit she got a new medication which I did not recognize. Googled the medication- one, it is a sulfa drug and two , it is used to treat pneumonia. What the heck! They have not done this when we were at the hospital, gave her other antibiótica so don’t know where this new one crept up from.

Yesterday was also time for the weekly dressing change and I am furious about they way it was handled. They should have used an adhesive remover because swati has sensitive skin. They did not have it. The nurse told Swati that it is only available in-patient. 🥺😡

This is a load of nonsense!! I would have never let her continue with the change if I was with swati. One of the things I haven’t learnt is they cannot do anything to you if you say. Srinivas was very upset that he did not know to put who’s foot down and Swati is dealing with too much other things to kick up a scene. Thankfully I have no such qualms so today, I plan on addressing all these.

I plan to go to the 18th floor and take some adhesive removers from Mercy one of our nurses💙 I texted her yesterday and will be prepared for next time.

I am settling down to do some work. More later. Thanks for reading

****Update 12:24 cst****

Yaay! Tomorrow we will know if Swati’s Tacronimus level check can be drawn from the central line.

All these days, three days a week (M, W, F) this Tacro check was a separate additional needle stick in her arm 😞☹️her arms are black and blue and she detests them. On these days, between 5 and 6 the phlebotomist would come by and I would go stand on the other side and hold her hands. My baby 💙💜(alternating arms)

Today, they drew blood from her veins during regular labs and now the nurse drew blood from the central line to compare the Tacro levels. If they match- we are golden.

All the labs including Tacro can be drawn from her CVC. NO MORE STICK.

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Day 141, d27

Home 🏠♥️😇

Swati is home- our Houston home but home nonetheless-
A good part of the day yesterday was spent waiting for the doctors to give their final approval for discharge and then packing up to come home. Sorry – did not update yesterday 😒

At this very moment, Swati is back at the ATC, the outpatient wing of MD Anderson. She will get some IV meds and and other maintenance as dictated by the labs. Srinivas is with her and I get to be home, working with one ear peeled to the ding of a text message. Not being the helicopter parent, but i am keenly turned to Swati’s needs at the moment 🥰

She had a good night’s sleep, definitely better than mine. At the hospital, I was second, after the nurses. At home, I am watching her with sleepy eyes, watchful for every rustle of the covers. Don’t know how to sleep on a regular bed. Realized that my right arm hurts from sleeping on this side, watching Swati. Now i need to be on my left 🙃

The nausea has not let up. We have to make a calendar and create 24-hour coverage with her nausea meds. This continues to be hard. Swati says she is sad; I am tying not to react viscerally, but support her and give her coping mechanisms. Planing to talk to some friends who have gone through this.

Ansh was here yesterday evening and cheered her up quite a bit. Bless his heart, juggling his new job with our needs. Always a pleasure having him.

Coming home, being home means something. But I feel I am someplace else. I have scratched the word normal from my lexicon. What is ‘normal’ any more? It took me four years to put my MS in perspective and (truly) make it a part of me. Now 🤔

Swati came home to a bunch of mail (old fashioned hand written cards) and hopefully showed her again, how much she is loved and cherished. Please continue to pray – we have a long road ahead of us.

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Day 138, d24

It’s official!!!

*****Engraftment milestone reached*****

Swati’s cord blood stem cells received on August 5th are making new blood cells in her bone marrow!! Her White blood cells are steadily increasing – 1.8 today, another important marker. Engraftment is also validated by an Absolute Neutrophil Count (ANC) of over 500 for three consecutive days. Today was Day #3 for Swati.

The absolute neutrophil count (ANC) is an estimate of the body’s ability to fight infections, especially bacterial infections. The ANC count measures the number of neutrophils in the blood, a type of white blood cell that kills bacteria.

Engraftment means the new cells are working properly and starting to rebuild Swati’s immune system. White blood cells are the first cells to engraft, followed by red blood cells and platelets. The same order in which they went down.

Her platelets are down again to 8 so Swati is getting a single donor platelet transfusion. This is one marked change from before when she would get a Pooled Platelet transfusion. I am not entirely sure how this tracks, documenting for Swati to read for later.
Swati continues to demonstrate all the correct markers at this stage of the transplant process and we are on track for a Tuesday discharge. WOOHOO!!!!!

I am not capable of emoting my feelings. Still in the ‘Do’ mod- now thinking of how to pack for our trip out of this room. The lists are flying out, fast and furious. Actually the more important lists are the discharge lists – of meds, of to-dos, how-tos and such. So I need a List of all Lists 👀😇

I sent a text to our doctor in Austin – Swati is so loved. Of course, he stays updated on her chart. He texted back

“Platelets will take awhile but good news on neutrophils! Everyone here was asking me about Swathi yesterday and we saw her labs…all the nurses and staff were excited and wanted to pass on their best wishes for a speedy recovery!!

To those reading this- Thanks for all your prayers, your support, your love – we are blessed.

♥️

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Day 137, d23

We have a discharge date!!! Monday 8/30 or Tuesday 8/31

I have no words – I do but they are tumbling out too fast♥️ will write again

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Day 133, d19

A restless night…

..I wish I knew why 😶

Swat was not able to settle down into sleep last night. Ansh was here the evening (Ansh and dad are going to alternate the evening visits ♥️😇) and we decided to have dinner from the cafeteria. She began to sense the oncoming of nausea a little before 9pm and decided to take the nausea medication. I also sensed a sadness bubbling up in her. This is usually brought on by the overwhelming exhaustion she feels. Tired in all ways.

I am not expert but we talked through it the best I could. encouraging her to look beyond the here and now, the larger picture. Telling her there are so many people supporting her and praying for her recovery – but this is too much to expect of a little girl 😰

channeling all my energy, my love 💙

Swati has slept through the nurse visits this morning I-am loathe to wake her up.

Her WBC count this morning is 0.6, up from 0.3 yesterday. Will be watching this closely.

In other news, my mom is back from New Jersey where she spent time with my brother. happy she is here 😇. Such a support for Srinivas and of course she is more than happy to take over the kitchen.

Oh I must confess – yesterday I went down to the 2nd floor of MD Anderson. Wow another world! A Starbucks!! A museum!! Shopping!! And I got a very touristy picture with a mannequin in a glitzy spacesuit.

This was more a recce- I want to go back with Swati. But I laughed for the first time in a long time 😅 I was taking a selfie with the mannequin and an employee insisted that he would take the picture for me, unmasked.

Amidst the noise of my life…..
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Day 132, D18

Monday, Aug 23, 6 am cst

This hit me that last few days. Friday’s incident with the IV shook me up more than I let on. I took a serious nap on Saturday afternoon, while Swati was on the chair, solving the Spelling Bee in the New York Times.

Swati received platelets on Saturday and towards the end, she began itching. The nurse insisted that that she should get something even though the doctor wanted to wait and see. A dose of hydrocortisone eased the itching. The results from the CT came and it appears there is a small patch of pneumonia which they are watching. Strong possibility that this is an old from 10 days ago and was the reason for her fevers. Swati was referred to an Infectious disease specialist. He recommended getting her back on Vancomycin (of the VRE-fame) in addition to the broad spectrum cocktail that she is already getting. She is also coughing more and Robitussin appears to be helping when the spasm hits.

If you recall, we started down this road because she was unable to get the spirometer as high as she used to. I continue to be thankful to my intuition, maybe just “mom-knows”

Am I mixing up my days?🤔😢

Seems so because the chronology is off.

The NEXT day saw swati in bed all morning except for a walk inn the morning. Another round of platelets. No reactions this time – Hurray

I will be honest though. She has cried more than a couple of times in the past three days. She is all round tired. Trying to make her see the end game (for now) through the haze of nurses and meds and IVs and labs – and I don’t know how she does it.

I am so proud of her. In awe of her determination her perseverance her tenacity. Her ability to push yourself. The same work ethic I admired I now see it on full display. Albeit this is the work of life. 💕💙💜

🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫

Yesterday (Sunday for me) her WBC counts were at 0.3
We are all keeping a eye on it. They have been wildly see-sawing between 0 and 0.1
Should I be excited? Cautiously optimistic I want to say.

****UPDATE 10:47 am CST ****

During rounds, on of the PG Fellows on the care team said we should not push Swati to eat. Since yesterday, the food aspect has been stressing out Swati. Boost nutritional supplement come up 3 times a day, then the nurse wants to scan with constant q of if we have eaten and then last night the nurse talked of protein as building blocks😞 makes us feel a failure.

Swati tries; more than anyone at this point. I am happy they can see that. yoghurt cottage cheese, protein flakes supplemented along with dal and rice from home.

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Day 129, D15

What a day!!

The day began ordinarily, still waiting for the CT scan. With the food restriction in mind, Swati had Boost and since the tiredness continued, she was in bed, mostly. By 7 am her morning labs came back with a platelet count of 3 and we pretty much knew that she would get Platelets today. Of course things being as they are, the nurses told us it would be more likely noon by the time the platelets got to the floor. Once it got to the floor, they would premedicate with Benadryl. If you recollect, we are not entirely certain about the origin of the shivering which manifested during the platelets transfusion.

I was worried about how we would manage the Benadryl, the platelets, the CT all al the same time because Swati would go to sleep after Benadryl. They said the platelets would take first preference and if the CT call came, then we would tell them of the platelet timelines.

1130am CST

The platelets are here and the nurse are in the process off verifying and hanging the bag up. They are almost done and the doctors enter the room on rounds. The first words out of the Attending’s mouth are “your intake was very low yesterday.”

Of course!! She has not eaten anything because we were told “NPO” – nil per os, Latin meaning Nothing by Mouth
The next question they are asking themselves is why a chest scan should be NPO. Swati was upset speechless already and I told we have been waiting almost 24 hours for the scan and the IV line for contrast was put in last night…..

I was interrupted mid-sentence and they ask me why contrast. Incredulous, I said you tell me. By now, my Mama Bear instincts were out in full force and it was clear that something was very wrong. A simple mistake but the waiting and the unnecessary needle poke and the IV and the tears last night – I was on a war path. Swati cried tears of frustration. I was angry. I had ordered lunch but Swati only managed a banana. My goal was to get the IV out of her arm.

The attending was very apologetic, said they would investigate where the miscommunication happened, etc. The Physician Assistant told us that he would put in a stat order for the CT. The doctors left and I kept reminding the nurses about the IV. The nurse went out to check if the IV could be removed (for what ever reason).

The Physician Assistant came into the room to tell us that it was his fault. Inadvertently he coded this as “with contrast and that kicked in the NPO order. He asked if we requested a change in time and that got my hackles up. I said we asked for last possible time when they might call us for a CT. Midnight? 2am?

He left the room and soon enough the transporters were at the door to take her to Radiology. However, no one is addressing the IV. The nurse tried to tell me that it could be removed after the CT, the transporters are already here, the CT team is waiting and such

I put my foot down.

I said we have had an unnecessary IV for 18 hours and it would not stay in a minute longer.

She removed the IV and covered up with a band-aid. Then they helped Swati into a PPE and onto the gurney for transport. It was 15 minutes by the time the IV tubing was properly arranged for them to navigate. Swati pointed out her arm and the PPE gown was lightly stained pink (PPE is liquid-proof, unless torn). The nurse realized it was blood and immediate held on to her arm. We did not look inside. Swati was digging her fingers, tearing a hole in the sleeve and the blood was seeping out of her jacket. The nurse was asking any one passing by for the crepe bandage and the one passing by took some time to understand what was needed. She was calmly explaining was was needed, all the while pressing a wad off gauze on Swati’s hand to stem the flow.

What a perfect storm!!

Swati’s platelets are low, she is getting platelets and her clotting function is delayed.

Finally another nurse came with the bandage and she wrapped Swati up. All of us – our two nurses, one transporter trainer, two trainees, myself and Swati trudged down the hallway to Radiology on the 3rd floor.

The scan itself took under an hour and we we were back in the room by 315pm. I gave Swati and apple juice and yoghurt and convinced her to rest an hour or so. Because the evening promised a silver lining to the day.

Swati’s boyfriend Ansh came back from his trip home, presented the negative Covid test, and was coming to see her. With Dinner!!!

It is now 10pm and we are settled in for a quiet night.

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Day 128, D14

Waiting & Waiting

..for a CT Scan!

The doctors at rounds said X-ray from yesterday showed a tiny patch which could be a ‘forming’ Pneumonia. Wile this is all expected and within acceptable ranges, they want a CT scan to look at the patch closely. We were scheduled for 2 pm and with no solids after 11am. It is now 9:45pm and no CT yet

At 430pm we were frustrated and ordered some soup and a grilled cheese because we could wait no longer. Our day nurses talked of moving this to tomorrow perhaps.

Swati has been tired all day and at &:30pm, just as she was about to go to bed after a shower, the phlebotomist came by to put an IV in her arm for a contrast CT. She was LIVID. They could not tell us when, or how late. They are known to call patients at midnight and 2 am for their CT🥺

Rather than go through the same tomorrow, she reluctantly agreed to the IV. She wept😢- just a combination of all things. Another stick in her arm, black and blue – Pains me and I try to not think.

I am sitting up, hoping they might come anytime now. But i have a feeling that it might not happen until late. So perhaps i should call it quits at 11pm🤔 and get on tomorrow’s schedule?

****Update 8/20 @ 7:20am****

No CT yet😶

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Day 127, D13

Swati is having one of her better days 🙂 Pain level is 2/10, not pushing the PCA pump as much. Her energy is coming back – making plans to play Switch with friends, watch movies with friends. I am really happy.

Today was an experiment of sorts for me – my first day working at the hospital. Once I finished my 8 am stand up meeting, the morning just ran away from me. I was okay with the listen only meetings, except for a few interruptions during rounds, or nurse visits for meds. I am incredibly grateful to my team for supporting me through this. Of course no two days will be the same, so will see what happens tomorrow 😬

One of Swati’s prescribed exercises is to breathe into the incentive spirometer. This Spirometer measures how much air you can breathe in and out of your lungs, as well as how easily and fast you can the blow the air out of your lungs. The exercises train the lungs to take slow deep breaths and to increase lung capacity. In talking to Swati, I thought the ball (in the spirometer) was not going as high as it used to a few weeks ago. I mentioned this at rounds and the doctor prescribed a chest X-ray. Swati pointed out some swelling in her feet, which doctors think is due to all the fluids she is getting. The IV fluids have been further reduced from yesterday’s levels.

The just confirms that we need to be our most passionate advocates. We need to, should talk of everything that we feel or that happens to us. The doctors pay attention to all we say and typically act on what we tell them. I may be in the hospital for a prescribed treatment, but how the treatment progresses is entirely in our hands. This is a huge responsibility, one that Swati is grasping, slowly, but surely, day by day.

I have been meaning to talk about something for the past three days –
Remember Michael who we took Chinese take out last week? He gifted Aditi and me with a caregiver meditation pack, as a thank you gesture. I have been experiencing this guided meditation track every night before bed and it is amazing. Very calming and grounding and I can feel the latent stress of the day melt away. Michael and Les have a discharge date and we are so excited for the rest of their journey outside the hospital.

Today, Swati received a card in the mail, addressed to her hospital room from Michael and Les. Swati cried as she opened the card, I cried as well – tears of joy this at having found family and humanity in the face of such a dreadful reality. I will leave you with these emotions.

Les & Michael’s card to Swati

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Day 125, Day11

With Swati ❤

This evening I switched places with Aditi! I am so happy for Aditi to go home and get some much needed sleep. She has much on her plate and and i am so grateful that I got to rest by being home these past few days.

I am looking around the room to see what has changed. Aditi has decorated any empty space she can find with cards and artwork. She also cleared up the desk for me to set my computer up!!
Yes! This time I plan on working during my hospital stay. I figure I should be able to work 8 hours in a 24 hour period. Will channel the mind differently. I have realized that there is only so much HBO/Netflix/Prime/Hulu that one can watch 🙂

Let us see what this evening brings. I hope she continues to be comfortable. The nurse reiterated that all treatment is geared to keeping her comfortable. The throat pain when swallowing continues and she has a slew of medicines to choose from. One of them numbs the mouth and throat and she does not want any part of that for fear of choking. I would too! But the doctors say it is their duty to be open about ALL side effects. We have to do our due diligence and also weigh the pros and the cons. We are deluged by drugfacts!!

The PCA pain pump is on. Swati presses it about five times a day – The doctor say that she could be pressing it a lot more. The average on the floor is 20-30 times a day 😰Quite a bit of leeway there.

Another symptom that crept up on her is the hand-and-foot syndrome. The tips of your fingers start tingling or burning. Holding a hot bowl is difficult. Showers are getting difficult also. Supposedly a lukewarm shower could ease the tingling. Will try that tomorrow.

Thanks for being part of my journey ❤

****update*****

My baby is coming back!!
She is walking and pulling her IV pole around the room, Snapchatting the scenery ♥️💙😇♥️🥰
How I have longed for this!!

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Day 124, Day10

…and so the day unfolds

7:35pm CST

No fever today!

Although the day began with a low grade fever, thankfully it has not gone further up. Swati continues to be monitored every hour. The blood cultures reveal one organism typically found in soil by industrial sites. This again is colonized- in other words it is not outside of her GI tract. Dr Q thought he would switch around the antibiotics but since she is holding steady, he is staying with the current antibiotics.

We knew this – but today heard from the docctor’s mouth –
Swati’s blood type will change after transplant. Of the two cords that she got, one will establish and that will be her new blood type. Now I understand why we sang happy birthday on August 5!

Which brings to mind the age-old question of nature v/s nurture.
What is enduring?
How far do we go with what we are born with?
How far does the environment nurture us?
Do I have an answer to this? Just my own answer

Swati knows who Swati is
Aditi knows who Swati is
Srinivas and I know who Swati is.
Swati’s friends know who Swati is

What ever her blood type, this is the Swati who will prevail.

“Selfless, compassionate, strong, smart, hilarious and a boundlessly kind person”

This is have taken from the GoFundMe page created by her friends.
A critical part of my job is to ensure that Swati comes out with memories of who she was before. I believe that who she was before has given her the character to face this difficult journey. I am taking this one day at a time. I am but a bit player – Swati is facing this with courage and faith and we will be there for her.

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Day 123, T9

a relatively quiet weekend

I think the heightened stress has somewhat subsided. Swati had a good (?!) day yesterday. On and off had a fever of 98.3 and thereabouts. She was able to manage the day. The doctors are not worried about the fever because it is not spiking high. Definitely an infection. She is on broad spectrum antibiotics and her blood cultures show no infection. We pray that this continues.

Today, Swati and Aditi planned to play their Switch with friends. Not sure if that took place. We have had updates regarding her meals and the nurses.

This morning Srinivas and I took a walk – one that he does everyday but my first. Stopped for coffee, smoothie and avocado toast at a cafe called Fellini in Rice Village. It felt good to get out. These days half my head is at the hospital ALL the time. The other half is on whatever it is that I am doing. A little bit unnerving, like watching from afar.

What are we watching today?

I am hooked on “100 foot wave” on HBO. Some years ago I read an article on surfing the largest waves in Navaré, Portugal. This episodic show is about people who have surfed these waves. The documentary captures their triumphs and travails. Something about this show has me smitten. 🙂

Thanks for reading!

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Day 122, T8

…Never a dull moment…more stress

1.30pm CST

Visitation hours have been reduced to 5-8pm and also the number of people on the visitor roster, from 5 to 3. I was happy to see swati after three days and while I did not EXPECT anything, I most certainly did not expect the hungama that I was witness to.

Yesterday, Srinivas and I picked up a Chinese takeout dinner for Aditi and another caregiver a few doors down from us. For Swati, I made puréed Rasam rice and curd rice.

I donned the PPE outside the room and could not wait to give Swati a hug while for Aditi tied the gown at the back. As soon as I hugged Swati, I could feel her shaking under me. For a second I thought she was overcome by emotion, but quickly realized that she was shivering. I asked Swati if she was shaking and she said yes through chattering teeth 🥶 Aditi said she was fine 10 mins ago at vitals. Asked her to ring the call button and an announcement blares out “your care team has been notified”. Appears this is a new bed. Along with all the other things that transpired in the four days that I was not at the hospital.

The nurse came in for vitals and she could not record Swati’s blood pressure – she was shaking so much. Swati had begun getting platelets an hour ago, having gotten a unit of blood earlier in the day. The nurse immediately pulled the covers off of her and called the blood bank unit. Her heart rate monitor (hooked up along with the pain pump is going off since Swati’s heart rate is going up. Very quickly, two nurse from the blood unit come into the room and begin their investigation. At the same time, Swati;s Tacrolimus infusion is complete and that pump starts beeping.

All these sounds are enough for anyone’s blood pressure to shoot up😰

The nurse pulls hangs up another Tacrolimus.

Swati has not had a reaction to transfusions earlier –
– Itching
– shortness of breath
– chest pain
While all these were ruled out, the decide to stop the platelet transfusion. The other nurse is drawing bottles of blood. Yes – bottles! Sized like your mini bar offerings. this blood will be cultured to see if her shivering was a reaction to the platelets or something else.

This could be an infection too since she has been fevering over the past two days.

Amidst all this, Swati is telling me all that has been happening, from nurses, to sitz bath escapades, to the morphine. And the pain. Last evening it was a 4/10

Her central line dressing change was due Wednesday and slipped the cracks. The day nurse could not do this because she was waiting for a go ahead from the blood back. Not wanting to introduce new infection.

6.45pm

time for shift change. Aditi decided to go and eat because there were too many people in the room. Though i am certain she could not enjoy the food.

By 7.15pm things quieted down somewhat and we got ready for the planned shower. Covering the central line, dragging the IV pole to as close to the shower curtain as possible. I clip the tubes to the basket so it does not tug and her hands are free.

By now Srinivas is circling around, waiting for me. remember this was to be a quiet visit. I tell him that i will be some time, waiting for swati to finish. When she comes out and sits, i towel her face dry with one of the soft towels from home and she leans into me. I hold her close, a million thoughts in my head but no words in my mouth.

By the time she is dressed and sitting in the chair, it is 7:55pm and I need to leave quickly

Quick note on the meal

Michael is another caregiver on our floor. We have been running into each other on our way to and from the refrigerator. We finally exchanged a few words on my last morning there. How overwhelming, how many unknowns, and how unprepared we are finally. We exchanged phone numbers and i said i would give his number to Aditi, so she could reach out to him if needed.

After coming home, I texted him to ask if they had anyone on the outside, in Houston. They are from San Diego and do not know anybody here. Aditi and he have met and Aditi said it has been some time since they had a hot meal. I decided I was taking him some food.

During these very dark days, my main emotion is gratitude.
– That we have a semblance of home
– That we are able to cook and take food for swati and the caregiver
– That we have people who will come to Houston to cook for us

And n number of reasons…

I had to take him something. I hope his evening was a bit brightened in an otherwise colorless day.

Thanks for reading!!

Anu

*******Update 5:45pm CST******

Swati had a much better day today, The pain is manageable at a3-4/10 and no fever spikes. Unfortunately, the evening vitals read 100.3 – i hope it recedes and she is able to rest tonight. Of course they will still come in every hour for vitals…..

Srinivas took dinner for her – puréed Rasam and rice and yoghurt and rice. Hopefully Swati managed to eat a bit. She tried Mac and cheese for lunch and it was difficult to swallow.

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Day 120, T6

…My personal countdown clock – Five days to hospital!

Life is getting to be a collection of countdown (or count up) clocks!⏰ ⏰

Swati continues to battle waves of nausea. In addition, the pain during swallowing is worse.
With a pain level of 8/20, she has pain meds at her back and call. Today, Swati will decide if she wants the PCA Pump.

Patient-controlled analgesia (PCA) is a method of pain control that gives patients the power to control their pain. The pump contains a syringe of morphine and is connected directly to her intravenous (IV) line. The built safety limit controls the dosage and the amount of pain medication dispensed.

Her fevers have been up down within a degree. They have not spike up severely – than god! If that happens, they will conduct other tests as protocol dictates.

**********Update 5:52pm CST**********

Clearly I am struggling 😶

Such a wreck this morning and I had to go into a dark closet and do pranayama Anulom Vilom. That did not help. Not sure if I was overwhelmed or was nerves protesting the stimuli around me. Told my manager that i was logging off for a bit, drew the blinds and slept from 11-1pm. Much better after.

Swati is spiking a fever. Doctors had put her on antibiotics in anticipation and moved around her nausea meds. I am relying on Aditi to send me regular updates and she is doing a fine job. I feel bad that I have left her to do this☹️ she says we are all doing our parts.

Srinivas has gone to the hospital with a mango milkshake. Swati cannot eat anything yet.

Long days ahead –

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Day 119, T5

Yesterday was the day of the swap.

Yesterday Srinivas brought Aditi to to the hospital around 2pm and picked me up.

Yesterday, I spent the night at home.

We were early enough that I could spend time with my uncle and aunt before they headed back to DC. She insisted on feeding me and made me dosas🥰 Around 6 pm we drove them to the airport and picked up some Chinese take-away.

What can i say about my first night back?🤔
How do I begin to describe?

The bed is too big, too soft
The room is too hot
The room is too dark
The blankets are too thick

My eyes and ears are missing:-
– The LED lights on the bed
– The cute lights on the IV pole
– The whirr and clicks of the infusion pump
– The loudest annoying click of the door as it opens
– The sound of the paper towel being dispensed and the ripping sound
– The beeps of the Infusion pump for “Air-in-line”, “Patient side Occluded”, “Infusion complete”
– The swish of the PPE as the nurses go about their work
– The rip of the PPE as they toss into the bin
– The ‘thunk’ of the garbage can lid as it closes

My eyes miss Swati – peering into her form on bed, tying to read any number of her minuscule moves

****Update 11:14am CST*****

Miss my showers with Swati’s chlorhexidine gluconate (CHG) foam, an broad spectrum infection fighting agent.

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Day 117, T3

How are you feeling now?

Swati’s chemotherapy is treating her leukemia by decreasing the bone marrow’s ability to make new cells. This lowers the number of cells in the blood (Red blood cells, White blood cells, and platelets). Blood counts are checked everyday for the duration of treatment. When the numbers are the lowest and have dropped to 0, it is called the Nadir

I have reached my nadir.

Swati has grade 2 Esophagitis, the inflammation of the tube running from the throat to the stomach. Yesterday, she had trouble swallowing and managed to eat her meals. Today, she has difficulty swallowing food.The doctor

*****4:53pm CST*****

I took a nap for two hours. Is this till a ‘nap’? 🤔
Swati had been sleeping for sometime and I just could not write. I pulled out the couch and crashed.
All but one of her meds has been changed to IV since the swallow is going to to get a bit worse before it gets better.

The IV pole is going to be one heavy monster.
*Add to notes* needs assistance to drag it to the bathroom and during walks.

Sometime during the next couple of days, I will switch with Aditi, who will be the boarder/Caregiver. Swati is looking forward to this 💙 I am making notes for Aditi, job aid of sorts.

Swati tries to do much of this herself, but now I absolutely need to jump in. During this time, I am also getting a glute workout in. The low-slung couch encourages mindful sitting and standing 😅

*****8:53pm CST*****

This is the longest I have been writing a single post 🙄
My uncle visited Swati this evening. Also delivered dinner. Pulverized yoghurt rice because this is the easiest to go down. ☹️

It is official!! Tomorrow Aditi and I will swap places. I will add her name as Boarder to the roster and I will do mt mama bear stuff in Away mode. Will use this time to recharge and reenergize and write on some of the things that have struck me these past 117 days.

Thanks for reading!!!

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Day 116, T2

Our second weekend, another Saturday at MD Anderson. Another day, seemingly the same, but oh so different. Now that the cords have been given, everyone is just ….waiting. Doctors, Fellows, Nurses, Patient care tech – waiting.

In the meanwhile, Swati is battling fatigue, nausea, diarrhea, stomach pain – the list for today. She engages herself with the NYT crossword and audio books, and the iPad gifted by her boyfriend is her constant companion.

Everything is being managed but the journey is hers alone. We are but her cheerleaders on the sidelines.

Our last nights nurse was the same one who took care of Swati on the night of her chest pains
Carolin breezed into room, asking if we recognized her. How could I ever forget?? Caroline watched over Swati on a very difficult night and I was happy to have her back. She recognizes that this mom is VERY engaged in her daughter’s care🙋🏽‍♀️ And I try to do this as respectfully as possible. I absolutely do not want my questions to strike a nerve 🤒

Yesterday, Swati began medication to prevent infection caused by the Cytomegalovirus (CMV). This is a serious condition affecting transplant patients in particular. While the CMV does not cause harm in the presence of a normal immune system, it can cause harm in a weakened immune system.

I am trying to maintain a transactional relationship with the drugs and the conditions they address. Let’s take it, manage the effects and go our way. I don’t want to go down a rabbit hole.
I am proud of the fact that ever since i heard the words “Acute Myeloid Leukemia”, I have not googled this or any other associate terminology. On April 13th, at Austin Heart ER I decided that I would keep the doctors in front of me till I was satisfied with the answers. That approach has worked for me – at St. David’s South Austin and now at MD Anderson.

The minute they finish their piece with “any questions?” Or any variation of this, I have the Notes app on my iPhone fired up and ready, questions/thoughts jotted down since their last visit.🥸I am grateful for the intelligence, brilliance, compassion and patience my family has experienced.

After Transplant, I texted the ER attending who made the initial diagnosis at Austin Heart. I was not expecting anything or a reply back. I wanted to let her know how far we had come since the first day. The very next second she texted back this : “Ofcourse I remember her and I get regular updates from Dr. R. Thank you for letting me know. Sending you loads and loads of prayers and good vibes. She will do well.”

I will leave for today on this happy note. Please keep praying for us 🙏🙏🏽🌞

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Day 115, T +1 (or T# from here on)

10:52am CST

The morning started out bright and hazy. Swati was wide awake at 1:45 when I woke up last night. I am sure she had a difficult time settling down after the excitement of yesterday. I on the other hand was out like a light by 11pm. My slumber was so deep I missed her 4 am vitals 🙄

Yesterday was surreal. The buildup was bigger than the transplant itself! Shannon asked if she could feel it and Swati shook her head, holding the tube in her hand. She watched the cord gradually flow into her. Actually all of us. Visitation starts at 3pm and Srinivas was able to experience the second one with Swati. when this is over, later, I want to know what she was thinking at this time.

Me, I was sending thanks to the unknown donors (the baby, the moms, the dads). Cord blood has an entirely different set of disclosure rules. NONE!!
So it is possible I may never get to thank the people who saved Swati’s life🌞

12:04pm cst

Stepped away for laundry in between writing. I have not said even half of what is in my mind 😶 Swat is getting blood – her hemoglobin is 7. Every time this falls below 10, she will get blood. Exhaustion is par for the course now and Swati is trying to sleep through the interruptions and disturbances.

I hope no one is offended or hit by quesinesss by the next few paragraphs.

Chemo does a serious number on the GastroIntestinal (GI) tract. We have had issues with hemorrhoids (one of the markers of her diagnosis) and it seems to have resurfaced. She is getting pain meds, and topical creams. I wish I could take this away – add it to my own.

A very important aside – if you have hemorrhoid issues lasting 30 days or more, please get a blood test. Better yet, have you primary care doctor dig deep. I don’t think enough attention is paid to the elimination part of our system.

If one of my doctors over the past several years talked so me about hemorrhoids, my MS diagnosis would have come earlier. Of this I have no doubt. My un-scientific research over the past four years has brought home the importance of gut hearth The well being of our gut is critical to our health and the last several inches is every bit as important if not more. Nobody talks about this. 🤫But every single woman I have talked with has had a similar experience. But this comes up only after I bring it up first. 😬 don’t know if this is similar but ‘don’t ask, don’t tell’🤫🤔

Going back to the beginning, I have not learnt the lesson😶 I should have pressed on Swati’s gut situation. Who knows? Maybe we would have aught the cancer before it invaded over 94% of her blood ☹️ This is a regret i will always have.

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Day 114, T 0

……and we are here, at the day, today

****Update 4:20**** Bag 2 is complete! The rest is a waiting game. 💙😍😇

****339 pm**** and the second bag has started!!!!

****Update 330 pm**** waiting for second cords!!

****Update 1:39 pm*****

And the first bag is done!!
Bright red cord blood is infused

****Update 1:12 pm*****

Swati is receiving the cords!!
We sang “Happy Birthday” and watched it flow into her line 🥰😇🧡

****Update 12:20 pm

Benadryl on

****Update 11:21pm****

12:45 the cords will arrive on the floor. The first bag is (?) 100 mls and should be done in 20 mins, max 30 including set up and flush.

Ordered lunch 10 mins ago- soup crackers cottage cheese. Hope she gets a little bit in prior

Swati’s cell counts at 0- Yaay!
Exactly where we need to be going into transplant. This also means she is tired. Wiped out tired 😓😣

I am asking her to visualize what her blood and marrow looks like – empty, hungry. So when the cords arrive she can visualize them as food for her marrow, nourishing her body with sustenance and giving them space to establish.

Interesting fact- Swati is getting two separate cords from two different donors. Experience says that one cord will establish itself over the other and what we will see is the synergies between the two cords which await with the engraftment 😇🧬

Evidence that divinity and science can co-exist. At least, I don’t need any more proof.

****Update 9:47am cst****

Shannon our nurse just updated that it could be noon. They are working on logistics and administrative paperwork. 😇😇

8:20 am

Swati and I went off to the ultrasound department at 7 this morning. Her line looks good. The veins look good. No collapsed valve. Or clots. Thank you god 😇

I will update this post.

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Day 113, T -1

A Rough night

Swati and I spent the evening watching Hunger Games 2 and 1 respectively. At about midnight she started feeling uneasy and I could hear her sheets rustling as she tried to get comfortable. She was feeling heavy in her chest and my thoughts went to her Central line. I began my usual ‘20 Questions’ approach to u desgane what was going on. My challenge is that Swati does not complain. I feel her stoic attitude blankets the reactions and symptoms and I am not able to get her the help she needs.

The nurse is in…

Finally, I insisted on ringing the bedside call button for the nurse. She checked her vitals, the central line – said everything looks okay and gave her a painkiller. I was in PPE and sat holding hands. She gets nervous if I am too close so I ended up sitting on a chair because I could not sleep in the PPE.

Twenty minutes later, she was still uneasy and I called for the nurse once again. This time she brought in the attending. The On-call Physician Assistant went over checklist questions and palpated the area around Swati’s central line once again. She said the pain was definitely local but the line itself was in place and good. Said she could give something stronger. swati hates the way Oxycodone her feel and she asked if there was anything in between. Alas there was not.

The nurse came in with the dressing change and some IV Oxy. I was standing next to her, holding her hands, my first look at the line that is going into one of the main veins in her body. The line that has carried the chemo all these days will tomorrow carry the cord blood cells.

Finally…..

Around 3 am, I could hear her sleeping. I got out of PPE and clambered onto the couch. The shift change nurse walked in at 6:50am and it took me a few mins to register. My eyes were hurting from the dim light focusing and peering at Swati’s sleeping form, trying to sense what she is feeling.

The first thing I did upon waking was to call in breakfast. One of everything not sure what she would want or could eat. Woke up with nausea and Gad orange juice with her meds

At about 10am she ate 1/4 of a pancake with syrup. And 1030am was rounds.

The doctors are not concerned but in an abundance of caution, will call for an X-ray and ultrasound.

Swati is resting and I will post an update later.

Thanks y’all, Anuradha

8:35 pm CST ****Update****

Swati and I are settling in for the night. The was sort of quiet, dealing with bout of nausea and the chest pain. Geetha, my aunt made aloo parathas, tomato chutney, and raw banana fry. Of course finishing off the meal is home made yoghurt and rice. 😃

The X-ray came back normal. The central line is in place and looks good. The Ultrasound team is back up, so the nurse pushed the exam to tomorrow. Otherwise they will wake her up at 2 am!!

Tomorrow is a brand new day in more ways than one! The cords will be administered sometime in the morning after rounds. Keeping Swati’s spirits upbeat and helping her visualize the new red blood cells taking hold in her marrow.

Please say a prayer for me when you read this – Thank you!!

Anuradha

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Day 112, T -2

2nd week @ MD Anderson

What a busy day I have had!! 1.30pm and finally a chance to sit and write 😂

Swati and I decided to have a lay-in this morning. She was tired and I decided to follow her cue. Woke up at 7:50 this morning -late by all standards for me 😱 Ordered breakfast which took an hour to get to the room. By then I was ready, tidied up the room and prepared to leave for my Central Venous Catheter (CVS) care class.

I have already demonstrated my proficiency in flushing the catheter but the video tutorial does not do justice to the finer details. I was the only one in the class and the one-on-one demonstration with a life size doll was beyond useful.

CVC post to follow 🙂

Ordered lunch on my way back to the room. Turns out that all my meals are being served in disposable containers, tray included due to my “Isolation” status. 👀 This morning my coffee was leaching out of the styrofoam cup -ugh!!! Need to ask for a mug from home <sigh> You can imagine the trash can after every meal . Add the PPE to it!! have been asking housekeeping to clear the trash 2-3 times a day.

So much PPE! for literally three seconds in the room. I have begun to wheel a small table to the door so the Kitchen staff can place the tray without stepping into the room, and without wasting a PPE. Some of the staff are regulars now. They recognize what I am thinking, and sort of knock and wait 😅 I am sure I am saving them precious time – wearing and removing the PPE for the “Isolation” rooms.

At 4pm today, we begin a new drug Tacrolimus, a prophylactic for Graft versus Host Disease (GVHD). Swati will receive this 24/7, from now through transplant to discharge. Her request to be untethered from the IV pole for a few hours was granted!! We walked a mile and took in the view from the family room.

Thanks for reading!! 🤗

Anuradha

4:15pm Update

Love is: cutting a chips bag for easy access

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Day 111, T -3

TrueBeam 6

7:10 am CST Transport has arrived to take us down to Radiation. One look at Swati’s IV pole and the Transport tech said he could not maneuver these two at the same time. So Arnel went off to look for another. I had my eye on some of the fancier ones I saw during walks.
Is that terribly shallow? Coveting a fancier IV pole?! Surely I have other things to worry about? 😣😓

once again, I forgot her piercings😤😡

The earrings were easy enough but the nose ring is always a challenge. The last time the happened was during the CT scan.
The main problem is my hands struggle with fine motor moves. This makes reaching up into nostril, holding the back and turning next to impossible. Swati’s had not been removed since she had the piercing in 12th grade. I had to remove mine and see what direction would loosen it. ( I need to removed mine every six months🤦🏾‍♀️🤦🏾‍♀️for my MRI)

This morning I repeated the steps. 😐waaay easier than the last time.

The next item was her jacket – too thick they said. The idea to to have as much of the body exposed as possible for the radiation waves to penetrate. So we switched. Good thing we both run cold; always wearing peel-able extra layers😬 they also wanted her to do away with the sweatpants.Heated blanket please!! 🥶

The radiation technicians were very kind. They let me stay with her through the setting up. Aligned in a straight line, belly button showing, arm under head and a bag of rice around her neck. This is because the skin in the neck region is the thinnest and the rice bag adds to extra layer to facilitate even distribution.
As always, this morning I reminded her of three things 1) breathe through the nose 2) put out the intention into the universe (WIPE OUT ALL THE CANCER CELLS) 3) focus on the science.
If we take a step back, the whole thing is very cool.

8:15 am CST

Back in room and breakfast awaits! 🥞 and whipped cream

Proud of myself!! Timed it right. Room service takes an hour after order – this is standard. I place the order at 630 as soon as service opened up. Yesterday, One thing led to another and I delayed calling in. And other things led to other things and Swati did not get to eat breakfast. 🤦‍♀️ my fault 🙁

Did better this morning. Though I forgot butter and syrup!!🤦‍♀️ Luckily I am a hoarder and had extra from last time 😂 The kitchen will literally send you ONLY what you ask for. 🙄 I would think syrup is non-negotiable for pancakes. But who am I?

Treatment plan complete!!

The rest of today and two full days of rest ahead👯‍♀️👯‍♀️
Must ask Swati what she would like to do. Our routine will be the same but some tiny element of fun maybe.

Thanks for reading!!

10:10am CST

This person wept!!

Came to the family room to talk to Srinivas. Swati does not like chit-chat and I don’t like talking about her in front of her. As soon as we got on FaceTime, I broke down 😢😢😢😢

Suddenly I got thinking about what this entire experience will do to her, to the person she is.
Swati is kind, compassionate, always thinking of the people around her, emphathy runs strong in her. Easy to say she will emerge stronger, will be a better person –

She will literally be a new-born on August 5th. But she is 25 years old, a vibrant thinking person with a personality. How will this mesh? The new flesh and blood with the Swati in her mind?

I am going to re-focus on the here and now. Put a smile on my face and walk back into the room. I am NOT acting. On the contrary, I am truly WYSIWYG😎 I WILL be the positive influence she needs around her.😇 Everyone else to the back bench pls (This to the ‘Other’ lurking inside of me 😓

12:29pm CST

After rounds: Pharmacology, Microbiology, Immunology findings have been synthesized for Swati and after hundreds and thousands of such treatments, it is expected that all the leukemia is nuked from her body. Later today and tomorrow, she will begin two drugs (prophylactic) to minimize Graft versus Host Disease (GVHD).

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Day 110, T -4

Day 4/4 Chemo on!!

Hectic this morning. The nurse came in to start premeds at 3 am followed by chemo 1 at 330am. Basically this is two IV lines, one for the meds and one IV saline.
At 430 the IV line started beeping. When that happens the message on the infusion pump reads “occluded line” or “Air-in-line”. We hit the call button and the nurse would resolve. This morning the beeping would not stop! At one point Arnel, our nurse stood by her bed for 40 mins, tapping the entire length of tubing!!

Better to stand than to dash in and out of the room and change into and throw away his PPE gowns😷🙁 By 9 am typical the trash can is 75% full with PPE. I am wearing mine most times, but have to take it off when I go out out the room.

Will continue later. I wanted to leave you with one image – Swati has a smile on her face 90% of the time. The rest I need to gauge and understand what she needs. ♥️

9:57pm CST

Swati is through the 4th and last day of Chemo therapy – almost!
The day was rough – the nausea, the exhaustion, the emotional down- it was too much.

During rounds, the doctors acquiesced to Swati’s request to be untethered from the IV pole for a few hours.
They agreed!!
We all could see Swati’s eyes filling up over the mask.
The emotions were also in part due to the NY connection the doctor had. He knew of CUNY, his three siblings are all lawyers, so…

Swati ate lunch and took a shower without the IV pole. I cannot even begin to imagine what it must have been like ♥️

Both mother and daughter had the deepest nap ever from 2.45pm to 4.30.

Dad arrived with dinner – her favorite Maggi noodles🍜 There was a heaviness in the air, she did not feel like much of anything.
Swati likes to go off and spend time by herself. Now she is constantly bombarded by people. Me, dad, the doctors, the nurses She has no “me time” and I am sure she misses it. I try to leave the room at intervals to give her space but I am afraid if she has to go to the bathroom by herself. Need to avoid falls, under all circumstances.

I had explored the laundry situation earlier in the morning, and when Srinivas was here I went off to do a load. Met a couple of people, all caregivers. We got chatting easily, shared burdens and all. It was nice.

No 3am wake up Chemo tomorrow! Yaaay!!
Swati has a 7 am Radiation appointment tomorrow.

Thanks for reading!!

Anuradha

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Day 109, T -5

10:10 am CST

Day 3 chemotherapy is complete. Swati received potassium this morning as well – balancing the salts. The early morning labs drive the choreography for the day and the goal is to stay on target for Day 0

Today was devoted to fighting nausea. One of the meds that really works for her was a one time dose and they need to call the doc the pharmacy to get this ordered. The second medicine causes severe drowsiness and is Plan B for Swati. Today we did not have a choice and went with Plan B while the other was being called and ordered.

During rounds today, The doctors walked in saying it was refreshing to treat a patient like Swati who can advocate for herself.

Swati knows her medications!!

Anyways, I started this in the morning and forgot to hit publish😂 Was distracted by the idea of laundry, searching for the laundry room, and taking the walk that Swati has been bugging me to. Forgot the dryer balls during move-in so the laundry will wait till tomorrow. I stepped outside the Main Building of MD Anderson for the first time in five days and walked to the garden directly opposite.

The Dorothy Hudson Garden and the LeRoy Melcher Jr. Memorial fountain is one of the many green spaces developed by MD Anderson to help patients and caregivers relax and enjoy a little bit of nature.

Pictures are taking too long to load – perhaps later.

I let my emotions run loose in the butterfly garden. A catharsis of sorts. Long road ahead and I pray for happy outcomes.

Coming back I went through the same routine – temperature checks, hand washing. I forgot my purse which meant mo ID. 😱 Thankfully I have an image on my phone. But my heart stopping moment was yet to come. The person at the front desk was not sure if he could let me back up because technically once I go out, I cannot come back in for anther 14 days 😱😱😱. He called Swati’s nurse and asked if I could be let up. She said yes – and I thanked the angels 😇👼 Came back up and told Swati I was staying put in the Main Building till whenever.

The 24/7 AC environment has made my face all dry and itchy. I have not applied lotion on my hands in four years but that might have to change. I have paper cuts and cannot afford open wounds. But I am STAYING. Can’t image not being able to come back in – Whew!! That was a narrow shave.

Swati is tired; she does not want to talk much and I am happy to leave her alone. She loves the NYT crossword And of course Netflix and reading.

We had and early dinner – Palak paneer, dal and Cauliflower paratha. My aunt is spoiling us♥️

Dessert time 🍧🥧

I pray for a quiet night and a calm day 4 of chemo tomorrow.

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Day 106, T -8

7/28 11.56 am CST

A good night considering 🙂 Swati and I slept from 11.3p0 -430a till the first vitals. Over the many nights in the hospital, my best sleep is between 430am and 63- ish and today woke up at 720!! 😱 – this was a scramble because I wanted to be dressed and ready for rounds (the doctors coming by every morning). I got ready quickly and was loathe to wake Swati up; on hindsight bad decision 🙂

Breakfast was late in coming to room – well past their 1 hr window 🙄 That set off a cascading series of events. Mercy, our nurse was kind enough to wait on the premeds till Swati had eaten breakfast. When she returned, breakfast was still not in. While prepping, everything happened all at once!!

The breakfast arrived, the patient technician for the bed and linen change,and the housekeeping staff for cleaning. While trying to let people do their jobs, I folded her blanket and comforter, cleared surfaces for them to be wiped down, cleared the floor to be swiffered, and encouraged Swati to eat one and a half tacos and down her Orange juice – All before my morning coffee 😇

And just like that we settled down for Day 3 at MD Anderson/Day 2 ATG IV

Cloudy Blue skies outside our window
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Day 104, T -10

9.49 pm CST

If I could turn my gaze away from the medical paraphernalia in the room, it felt as if I was unpacking in a hotel room. Crazy thinking – how do I not see what is ALL around me? This is the 18th floor of MD Anderson’s Stem Cell Transplant unit and I have just finished unpacking Swati’s things as we try and get down to the next 30 days – immediate term.

It was perhaps around 330pm in the room, that Srinivas, Swati and I took in the surrounding covertly, each trying to swallow the million questions running amok in our heads. My motif: a duck, serenely gliding in a pond. Oh if you could only look under the water line – the desperate paddling to keep moving. But we don’t really spend the time to put our heads under under the water.

The day nurse came in along with the technician for intake questions. I am stricken by the easy camaraderie they establish with Swati. Every single experience with her health care team has been a meaningful experience and I am so grateful for that. With this crew, the conversations range from cities we have lived in, to mid town New York city, to the Olympics.

My Breaking Bad moment: turns out we are not allowed to have any medication in the room.the nurse counted the pain meds, corroborated by a second nurse, put medicine bottles into sealed baggies and whisked them off. Out goes Swati’s medicine bag contents into the pharmacy vault until discharge 😳

Physical movement is *highly encouraged* and Swati and I decided to get a head start by exploring the floor. Plenty of patient rooms, sophisticated medical environs, a Family room with comfortable couches and vending machines. Swati gets to collect a sticker at the nurses station each time she comes out of her room. collect 15 stickers and you get a prize – ranging from colorful bandana, to hats and ….. (not sure of the complete stash) 😂

By 5.30pm, we are ready for dinner and have fun looking over the menu. I am pretty sure we will try out many of the menu items, and still enjoy a home cooked meal for dinner. After dinner, we went for another walk around the block and at two rotations we saw the IV fluids parked outside our room. Swati hoped (against hope ) she would have one more night untethered. We ducked and avoided the nurse for another two rounds before going back to the room. We can run, but we can’t hide. 👀her body needs to be prepped for the treatment starting tomorrow and is on IV fluids for tonight.

During our walk, I told Swati to give it all she has got. I asked her to draw strength from her innermost recesses to fight through the next 10 days. I know, yet don’t know what each day will bring; just that I have to draw on my wellspring of resilience, some days for me, other days for both of us.

Some of you may have heard me say this – I have this vivid imagery in my head.

I am standing (stranded?) on a nightmarish island and am besieged by most ghoulish, devilish creatures. I crane my head, jump up and down and as far as my eyes can go, I see the people who are supporting me through this difficult time, their presence gives me the impetus to fight.

Fight is not the word I need; Fighting seems futile. Better to Stay the course. I think of this as repayment of dues. And this needs grace in the face of abject despair. This is a parent’s worst nightmare.

Not to this on a despondent note – I am lifted by people, known and unknown, far and near who have chosen to walk this path with me, who have embraced me with kindness and generosity. I share this with Swati and I want her to feel my strength, which stems from you, dear reader.

When Srinivas left us to go home, I could feel his pain, his helplessness. That this is one of the hardest things he has done. But visitation is not as stringent as we were given to believe. He can come back every day between 3-10 pm and spend some time with Swati.

My aunt is flying in from Bethesda, Maryland tomorrow. She has graciously agreed to take on the kitchen responsibilities so that Srinivas an focus on other things. while the MD Anderson menu holds possibilities, nothing beats a home cooked meal and we like a dinner from home 😇

I pray for strength, for Swati and hope you will join me.

Best, Anuradha

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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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