A Cultured Life…

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

Day 183, d69

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

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

Will update as the day goes by.

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Day 179, d65

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

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

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

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

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

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

Navaratri 2021

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

Thanks for reading!!

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Day 176, d62 

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

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

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

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

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

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

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

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

Tuesday, October 5* Day 177, d61

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

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

The miracle of steroids

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

I, on the other hand, not so.

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

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

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

Thankful for many blessings and thank you for reading

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

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Day 174, d60

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

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

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

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

Will update in a few hours.

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Day 174, d60 ***Updated***

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

This procedure will look for all of the below-

1- Candidiasis

2- Ulceritis

3- Esophagitis

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

5- GVH – microscopic, wbc, diagnostic

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

Will update in a few hours.

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

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

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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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