Two More Rounds

From James:

Since I last posted, So Young has undergone two additional rounds of radiation, bringing the total treatments to three. The last treatment of the week will take place this evening. I took her on Monday and Tuesday, and Dad took her for the first time last night. He will drive her again tonight, while Mom continues to watch the kids and help So Young at home. I will likely drive every Monday from now on, because we will meet with the radiation oncologist on those days.

Yesterday, I wrote a six-page guide for getting to and around Johns Hopkins for the radiation appointments, since there are some complexities to the visit, including parking, checking in, finding the hidden waiting room, and administering medications. Dad and I are refining it. It should be useful to anyone who drives.

So Young has experienced no side effects from the treatment yet, although sometimes she feels more tired just afterward. Significant tiredness is supposed to hit in a couple of weeks, along with hair loss. Those are sort of the “guaranteed” side effects. Others are possible.

We learned something interesting about the burning smell that occurs while So Young is undergoing radiation. The technician said that it is not an actual smell. Rather, the part of the brain responsible for smell is being triggered and is “manufacturing” a smell that is not there. So Young said she could smell it even while plugging her nose. 

Instead of sleeping all day and night like she used to, So Young’s days and nights are reversed right now, but we are turning things around. The psych nurse (Laura) got her a prescription for a low-dose and non-addictive medication to help her sleep at night, and we are starting to practice better “sleep hygiene,” like waking up at the same time every day and only allowing one-hour naps. It’s difficult because of the number of things making her alternately too tired and too awake right now — medications, the tumor, being depressed and anxious about having a tumor, etc. 

So Young and I continue to be amazed at the support we are receiving from friends, neighbors, and coworkers. We don’t have to be told we are not alone in this, because we know that we aren’t alone.

Speaking of alone-ness, did you know that radiation waiting rooms are mini-support groups? The waiting room near So Young’s machine is tiny. Patients end up at the same appointment times for many days in a row. They get to know each other. Many are going through the same things, even the same type of cancer or a tumor in the same location. So they talk and share experiences. Like any traumatic experience, cancer can make people amazingly vulnerable and open.

As someone not suffering from a life-threatening disease or its treatment, I feel a great deal of compassion for these people, some of them very young, but really of all ethnicities, incomes, and backgrounds. The broken human condition is no respecter of persons. There are so many needs out there — not just for the body, but for the soul and spirit. I sense that many of the needs of these people are not met, despite the best attempts of places like Johns Hopkins to meet them, and many people do indeed feel alone.


2 Responses

  1. Everytime I look at the of the two of your from your last post, I think how beautiful So Young looks. It brings back very fond memories of our trail runs together and how we laughed and competed to see who would draw “first blood”. I’m not sure who fell the most times, So Young or myself. Just like the trails, I’m sure you will continue to experience the “ups” and the “downs” and I’m glad you know you are loved and supported all along the way. Get better my friend…so we can run together again in the spring…Lots of love…

  2. Ruby, James and family, you truly are amazing. But I guess, when the going gets really tough, the really tough get going.

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