A Cultured Life…

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

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 156, d41

A few steps closer home..

Yesterday we had further results from The biopsy. There was no evidence of the FT3 mutation!! This was one of the gene markers that we had been tracking from the Austin days.

Swati continues to make progress day by day. We are encouraging her to graze every few hours:) Identifying different foods that might tickle her palate. Swati asks Pati to make onion dosa 🥰 Srinivas has a supply of Tiramisu at hand and she loves those.

Today our apartment in Houston had a food truck come in the evening. The cuisine was a collection from Tennessee, Texas, and Louisiana. Srinivas and Ansh got their dinner from here. Swati did not and she was very upset 😢😢Wanted to eat truck food but knew better to wait a bit longer. I felt terrible. Hugged her and said she has come a long way and truck food is a matter of a couple of months down the road.

She is such a champ🧡 I am trying to not get into her head. So I cam maintain my objectivity. How many worries, sorrows she is facing? I can only point to her the sunrise that is peeking over the horizon.

Day by day, the home infusion continue to stay the stable course. Today I was unable to flush a line that I used yesterday. Went with other and we decided to call the vascular procedures if it continued to be difficult in the evening. By the evening I was able to flush all three. My heart is literally at a standstill during the process. I can honestly say I will be glad when we are done with this.

I don’t have much energy to write these days. I am running one empty and am counting the days till I get my medicine. Have an appointment for next Wednesday and will be a new person after 😇😄

Till next time- thanks y’all!!

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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 147, D33

Met Dr. Shpall on FaceTime today!!

She is thrilled that Swati has done so well through the process thus far! Srinivas pointed out the nausea but Dr. Shpall did not appear too worried about it – if it persists over the next two weeks, she might consider an intervention.
Some of her medications do cause nausea but she will have to continue those to day 60. So powering through those is the only option.

Swati needs to walk more, build up her strength, eat well. Tall orders all. Will see how that goes.

I am tired and crabby today. Irritated. Cannot bear the sounds around me. My MS nerves speaking. I am holed up in one of bedrooms, away from the bustling living area and writing this. Nothing that a few (many?) quiet hours will not resolve.

Swati returned from her appointment with a smile. Same as yesterday. Meeting the doctor today did her good, I feel.

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