A Cultured Life…

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

Day 108, T -6

My temperature – 96.3
Hospital policy to check the caregivers temperature every morning and give me a sticker for the day

Today’s schedule

2:30 am – premeds
3 – 6 am  Chemo 1&2
6:15 am – Chemo 3
9:10 am – potassium and magnesium separately
11.30 am – blood product

The mind is a strange & beautiful. Constantly seeking the definitives, satisfied once the definitive acquired.
This happened with Swati.

The morning was not as frenzied as yesterday. Swati stayed in the half-awake, half-asleep state through the early morning activities…

****12:25 – not-a-fever 100.3
Blanket off, room temperature reduced surreptitiously (Swati generally runs cold and people walking in usually remark on how ‘toasty’ the room is.🌤
****

….Having conquered the ‘unknown’ of the first chemo, going into day 2 was a tad easy. The ‘monkey mind’ as meditation gurus like to call it, found a new avenue to torment – exhaustion. 😰😮‍💨

Cannot-lift-a-finger-up exhaustion 😰😮‍💨 😰😮‍💨

Swati managed to force herself to get out of be and eat breakfast in the chair. Yaay for her and one more check box ticked off for the day.

****3 pm – temperature down to 98.3 and I heave a sigh of relief

This morning the dietician visited us. Must have proteins and calories. Stay away from added sugars. Swati is in a high metabolic pre-transplant state and will remain so for 90 days after transplant.

I passed my Central venous access device, or CVAD check-off!!

The CVAD is a catheter that is inserted into and positioned within a vein in the body to deliver therapies directly into the blood stream. In Swati’s case the CVAD is inserted in to the subclavian vein below the collar bone. I had to take a CVAD home care class and show proficiency for when Swati came home.
I performed the exercise under the watchful eyes of the Vascular procedures nurse and it is official!🏅

Definitely calls for another post and I will link to this.

My to-do list for the rest of the day is ensure Swati gets through the physical activities for day. The charge nurse, Clem is a task master 👀So are the doctors! They want us to walk 1.5 miles, besting the 1.3 from yesterday🥸

Thanks for reading!

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Day 107, T -7

Chemotherapy cocktail begins…

…and the infusion is done by 9 am CST!!

Thankfully she is in a drug induced slumber. A wise nurse at St. David’s South Austin told us it is better to sleep than to throw up and be uncomfortable. That is the motif for today and I am trying to keep her comfortable. The day began at 3am – quietly but intensely.

The nurse came in to start an additional IV line in the arm for the pharmacokinetic (PK) sampling during infusion. The first two Chemo meds were an hour each and the third and last one was completed in three hours. The PK sampling began with the third one at 15, 30, and 60 minute intervals.

PK sampling involves taking several blood samples over a period of time from Swati to determine how the body handles the substance. The data collected over the 12-hour period informs the precise formulation of the chemotherapy regimen, specifically tailored for Swati.

This exercise was conducted last Thursday. But protocol states this is repeated once again after admission and during the actual treatment itself. The additional IV line in the arm has two lumens for infusing and withdrawing blood. I hurt steel myself when the ultrasound guides the needle through the vein. Usually Swati grips my hand for any bedside needle work. But due to VRE and PPE, she did not want to hold my hand 🙁I was holding her arm to let her know that I am near her side. I sense that the VRE-complication weighs heavily on her.

I try not to think of what is going on in Swati’s mind, or the pain she must be experiencing, all kinds of horrid, horrid pain. I hate this and will be useless if I give in to these thoughts. Perhaps, one day, Swati and I will speak the unspoken words from this hospital room. I hope and pray this day to be gentle on her.

For now I want to bathe her in love and light from people all over the world – family, friends (hers, mine, and ours) – who hold her in prayer👼👼😇

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Day 106, T -8 #2

The ATG part of the treatment was uneventful – Thank you God!

From today, when we are in the room with Swati, we have to be gowned in full PPE. Swati is postitive for the Enterococcus, a bacteria found in the GI tract. For most people with regular immune systems, it does not cause any harm. Since Swati’s immune system is down, the bacteria are having a field day and not responsive to Vancomycin. Hence the term Vancomycin-resistant Enterococcus (VRE)

This is an added challenge – the caregiver has to wear the PPE gown at all times while in the room. While leaving the room, the gown will be disposed off in the trash inside the room. I will put on a fresh one when I enter the room. Same for any visitor.

Swati on the other hand, needs to wear the PE when she leaves the room for a walk.

Quite uneasy about this turn of events. Recalibrating the many moves….

Tomorrow we begin the Chemotherapy regimen, specially tailored for her after last weeks test dose. We start infusion and IV lines at 3am.

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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 105, T -9

Treatment plan initiated 👼

A fitful nights sleep for the two of us. Swati and I have been sleeping in two and four hour stretches waking up for vitals and blood draws at 4am. Pretty much the routine we are already used to from St. David’s Austin. I was happy she was was hungry and we had fun pondering breakfast options.

  • 830 am – time for premeds – steroids and Benadryl
  • 9:00 am – Morning meds
  • 910 am – Infusion begins!!!🙏🏾
  • Noon – Lunch
  • 2.20 pm – Infusion complete
  • 4.30 pm – Shower (Counts for two activities on the daily chart 💃
  • 530 pm – Smoothie with protein powder and chocolate chip cookie
  • 6.20 pm – Srinivas walked in with a home made dinner and a box of Georgetown cupcakes, courtesy my aunt from Bethesda ♥️
  • 6.45 pm – Electrolyte infusion based on lab reading
  • 9.00 pm – Night-time meds

This place, like any other hospital is no place to rest, presenthe of a revolving list of providers.

The Benadryl started acting in about five minutes. While Swati was trying to sleep off the Benadryl, the doctor came in, along with the Pharmacist and the Advanced Practice Nurse (APN). After the introduction, swati continued to sleep and I filled them in on the night’s and day’s activities. Interestingly, the doctor wanted to know if I was ‘medical’ because I was speaking their language 🙄😎 Between MS and the healthcare system in general, and now Leukemia, I have realized the importance of advocacy and staying on top of things.

And this began the revolving list of providers. Each of them had general questions around fatigue and mental health, as also helping identify a baseline before transplant and provide advice of their specific areas of expertise as it applies to Swati.

  • Physical therapist (Christin) – Exercising for greater flexibility and strength, avoiding falls, walking safely, adapting to physical changes
  • Nursing shift head Charge nurse (Clem): Education for all things related to Stem cell transplant, including hygiene, oral care, Central Venous Access Device (CVAD) care and education of the care giver.
    • Here is my homework! I have been instructed to watch a video on caring for her CVAD. Flushing as well as dressing change. This is definitely another article as I work through my emotions.
  • Social worker – Coping with stress and other mental health challenges
  • Occupational Therapist (Ashley) – Daily living activities such as bathing, grooming, and dressing. Also managing home and work activities.
  • Head of the Adult and Young Adolescent (AYA) clinic (Janae) – helping serving patients 15-39, in active, treatment or post survivorship, navigate the unique challenges accompanying this diagnosis

This wretched disease has an amazing network of varied support systems; Navigating these systems of help is a challenge in itself!

Today has, so far, been an uneventful day, except for a 98.2 degree fever which no one is worrying about yet. I am praying for a restful night and the same for tomorrow.

Thanks for reading y’all!

Anuradha

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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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The big ‘C’

Hello world again! 

I am hopeful that this hello comes out passionate yet matter-of-fact rendition of my journey with the dreaded ‘C’ word. My daughter’s journey. 

On April 13th, my daughter was diagnosed with Acute Myeloid Leukemia (AML). This was a body blow; our world came crashing down. Certain phrases come to mind. 

The world started spinning.

The world came crashing down. 

But my memory of that day does not include tears. Disbelief? yes. The period from then to now will be catalogued in subsequent articles. In the meanwhile this and the following posts come from Houston.

102 days after diagnosis I am sitting in our Houston furnished short term accommodation, writing this post and making a list of the things I do not want to forget. Tomorrow, Swati will be admitted to MD Anderson in preparation for a cord blood transplant. As her caregiver, MD Anderson permits one person to stay with my ‘loved one’ (except for legalese, Swati is not a ‘patient’ in MD Anderson’s lingo 🙂 but more on that later) 

Someone asked me if I will be busy in the hospital. I was taken aback and this leads  me to articulate what I will do. My job is to be there with all my heart, my senses and my sensibilities. Help Swati set intention and focus on the world that is holding her in love and prayer and support, help her navigate the treatment course, and hold her head and hand through the side effects and symptoms.

Which brings me back to the day THIS unfolded at Austin Heart Emergency. The blur of events left one unforgettable emotion that I fiercely hold on to – 

  • Swati WILL be an amazing lawyer.
  • Swati WILL go to CUNY law school. Not September 2021 as planned but in 2022. 

In the meanwhile I will be the mom, trying to parent a 25 year old, who is an adult in every sense, but yet to see see all of life’s rainbow colors. Steeling my breaking heart, I walk one step behind her, as she navigates the cancer diagnosis and the impossible choices no 25-year old should have to make. 

My hope is that my blog will inform and uplift the reader, bring them into our world as we go through the next one hundred days. In addition to chronicling the day to day, I will also pen the previous 100 days, sort of a look back for Swati to read. 

If you are reading this, please take a moment to say a prayer if you believe or send an intention out in the universe. Praying for all the angels to look after my baby

Thanks for reading!!

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