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March 5, 2016

March 5, 2016

Friday March 4, 2016 - Video of the day: https://youtu.be/y-BZNZ0AiMk

My new friend Violeta a patient at Infusio - She is amazing!
After returning home on Friday from a marathon session of treatment, 7.5 hours, I was beyond exhausted physically and emotionally. The scheduled treatment was not unusual, it was the vein my IV was placed in that brought my treatments to an extremely slow crawl. Sure, I could have agreed to have a new IV placed, but my veins are in short supply so I need to make the most of every vein willing to provide an avenue for treatment delivery, even if it is slow. Although slow, things were going okay until the last infusion was placed - it is a bit of a sensitive one, especially with a small vein. As 5:00 pm approached and the last patients were completing their treatment, I said "enough". There was a small amount of the infusion left, but it so was not worth it! I had already taken a Morphine, Xanax, and Zofran about three hours earlier. I was done. I was excited to have the IV removed for the weekend! Free at last. By the time I arrived home, I was very hungry and tired. I had a chance to make a short video, in which I broke down; shortly after I ate some food I fell asleep. I slept through the night until I awoke around 8:30 am Saturday morning. 

On Friday, I had a lovely conversation with Dr. Joe as I call him, my mouth cannot seem to say his proper name -lol. I learned that he is trained to provide some Ayurvedic treatments, he studied in India. This made me happy especially after he offered to provide me an Abhyanga massage next week. As we spoke, it was clear we both struggled to understand each other; the language barrier is a real issue, especially considering the medical setting. Collectively, the staff at Infusio does their best with understanding and speaking English yet there are moments when I think, it would be so helpful for both parties to fully understand the other. For example, there was confusion over the word hurt and heard; two entirely different words, yet when you think about it, they sound similar through the ear of a non-first language speaker of English. 

This is Pia, the office manager - she is always smiling. 
I have been thinking a lot about Infusio, how we were gently dropped in this foreign land, and how we have navigated the unknown. As new patients arrive, especially from the states, I learn of similar patient struggles, some more impacting than my own.

The aforementioned situation of heard vs hurt made me think of a current issue occurring between patients and staff - perhaps issue is too strong of a word, yet I will leave it. The clinic does not provide patients a specific treatment plan of services and infusions that will be delivered during the duration of the four-week cancer program. We do know that we will have access to all the treatments listed under the cancer program listed in the Infusio brochure, it is just not specifically laid out before the patients - like in the US, I am not sure how other countries programs traditionally work. The current protocol of Infusio, as I understand it, is that at the end of the treatment, each patient is provided with an accounting of all treatments received, including the dates. How I mitigate the Infusio protocol is that each day, I ask what treatments I will be receiving and keep track of it myself- this works for me. As the treatment progresses, adjustments to the program are often made to fit the current needs of the patient - for example, I am getting hyperthermia treatments daily to address two different tumor areas on my body. Most patients get hyperthermia every other day.

What is getting lost in translation and why are there unhappy patients? From a therapist perspective, I would offer that most patients are terminally or chronically ill; because of this, there is little control over anything in our lives. Being able to understand and know, as much as possible about the treatment being delivered will provide a sense of peace to many patients. Infusio needs to understand that many patients that seek treatment outside their country of origin, have ran out of options and want to be in control of what is happening to their bodies. We too are researchers -so knowing what is happening is critical. Several of the patients I have met have questioned and gone against Western and European modalities and recommendations at one time or another, acting in what was in their personal best interest. Therefore, it is even more common for “us” the patients to question what is happening with our treatment at Infusio – it is not a bad thing, it is simply the patient desiring to garner additional medical knowledge of current treatment, this is imperative for the psychological, emotional, and physical health of patients.

Infusio’s response is to tell patients not to worry about treatment, that they [Infusio staff] are there to take care of us, make us feel good, and that we need to concentrate on being healthy and getting well. While this is true and quite noble, there are two sides - from a patient perspective, we want to understand what is going into our body, what each infusion is doing, what the side effects may be, and how this is healing our body. Having this information will then provide psychological stability thus allowing for healing. I am not sure if this situation is a cultural conflict or institutional programming issue. Regardless, I truly hope that Infusio grows to have a greater understanding and will consider how patients experience treatment. It is a growing and learning process. My experience is that Infusio is open to patient feedback; systemic change takes time and is typically not immediate. Despite all the challenges, I maintain that the staff at Infusio is wonderful; the environment is bright, positive, loving, and healing.

Although my body is still tired, Curtis and I set out Saturday morning to walk to the center of town. We stopped at Starbucks - they were out of Chai Tea to make a Chai Tea latte, that was a letdown for me. We then set-out in search of eyelashes. After asking several individuals, we successfully located a store called Douglas, that did carry eyelashes! Yippee. I will wait until Monday to try to put these lashes on - they are synthetic not human hair as I am used to. 

On another note, after returning home from my morning walk, I lit a candle and then fell asleep. When I awoke, there was wax that formed on the side that looked like a bald-headed person cloaked in flowing clothing was praying. I thought it was pretty cool. I have not felt very well today; I’m not sure how to describe how I feel other than to say I feel “off”.  I am really glad tomorrow is Sunday and I can rest another day prior to undergoing treatment again. I remain homesick and am so ready to come home! I am halfway done with treatment. 


Today, I am hopeful~