Don’t Let Go of the String of Hope

Interview of Hyang Sik Kim

Seoul, South Korea

Translated by her son, Chang Hyuk Sim


 

Q: What’s your LMS history?

A: Date of diagnosis: Jan 2013 (age 63). Treatments listed in order of occurrence:

  •   Primary tumor: retroperitoneal (about 3.5 cm). I had targeted radiation SBRT because surgery couldn’t be performed due to involvement with blood vessel. It worked.

  •   Tail of the pancreas (about 2cm). SBRT controlled it for two years then grew back, so did SBRT again and now it is controlled.

  •   L5 spine (about 3.5cm). I had SBRT first then surgery. It worked and no recurrence yet.

  •   Four small mets in buttocks and thigh areas. I had surgery.

  •   Abdominal wall (about 2cm). Again successful with surgery.

  •   Left jaw mandible (parotid) area (about 5cm). Removed with surgery.

  •   Scalp (about 0.7cm). Removed with surgery.

  •   Left lower lung area (about 2cm). I had SBRT successfully.

  •   Last in 2021, I had primary lung cancer (ground glass nodule) (about 3cm). Again removed with surgery.

 

Q:  What is your current LMS situation?

A:  Currently, I am doing fine living a normal life. Yet, we are monitoring several possibly 3 or 4, very small stable (or very slowly growing) nodules which are less than 0.6cm in both lungs. These have been mentioned in my CT scans since many years ago already. 

 

Q:  What do you most want to share?

A:  After this difficult time passes, you will have a life without regrets. Don't let go of the string of hope in any situation.

 

Q:  How did you, or do you, cope?  What helps? What does not help?

A:   My son giving/helping me with which treatment options would be the most suitable in a given moment helped me the most. This would include even him simply sharing other LMS patients’ stories from the LMSDR Facebook group with me. It helped me mentally/emotionally in a sense that I didn’t feel alone in this. On the contrary, simple general positive messages such as ‘everything will be okay’, ‘you can do this’ by my friends/ or even other family members have not been emotionally/mentally very helpful.

 

Q:  What have you learned through this journey?

A:  Don't think too much about death as it is what everyone will face anyway sooner or later. If you start doing what you have to do today, that’s a step forward in life. Let's do our best in the present.

 

Q:  If you could start all over, what would you do differently?

A:  I have no regrets with decisions I made during this journey.

 

Q:  What are you glad you did?

A:  I am glad that soon after diagnosis, I started to make some vegetable soup (made of some radish leaves, carrots, burdock root, some mushroom). This was first created by a Japanese doctor. I believe this removed toxins from my body at start of my treatments (which is not really based on scientific evidence of course and unknown whether this really helped me in terms of cancer treatment). Our thoughts on alternative therapy is: this vegetable soup thing as well as so many other supplements marketed as anti-cancer without evidence are popular in Korea for many cancer patients. I believe similar things/alternative therapeutic methods are popping up here and there many cancer patients grab onto in the US as well. We would never know these would be of any help, and sometimes of course some of these can be harmful to many patients with toxin on the liver. What is important is traditional treatment (surgery, radiotherapy, chemo) is somewhat never enough just to solely rely on for those patients with limited treatment options. As long as it does not cause significant harm and can be afforded financially, some of these (like vegetable soup or Essiac (herbal tea) or something like hyperthermia therapy or whatever) must have its role in our journey, regardless of the outcome in the end. Some research on this vegetable soup can be found at https://onlinelibrary.wiley.com/doi/10.1155/2021/8194219

 

Q:  What’s your most important advice for newbies?

A:  Look to God. Then, set a good direction and move forward. Be in control of your life and move forward.

 

Q:  Anything else you want to share?

A:  Nothing else. Thanks a lot for your awesome work on this LMSDR foundation and Facebook group!

 

 

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Have Faith – Amy Antenucci

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My 10-Year Journey with Leiomyosarcoma