A Cultured Life…

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

Day 168, d53

on September 29, 2021

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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