Health Update’s Update

Just a brief follow up. I was seen at Seattle Cancer Care Alliance on Tuesday. As I described, it is hard to tell if my cancer is coming out of remission because of mixed lab findings. They agree that it is not clear. We have decided to follow one value, my gamma light chain proteins (which the plasma cancer produces). It recently went up from 70 to 117. Normal is 25. If it reaches 170, then we will declare the cancer out of remission and must do something differently. We discussed options of a monoclonal antibody drug (daratumumab), or entering a study of Car-T, Bites, or Tites. One of those studies may have a treatment that could be a cure (to early to tell). The only reason I would not jump to them now, is that they have substantial costs and risks. In Car-T, they remove my own T cells, reprogram them in the lab to fight the cancer, and put them back in. While the results are very promising, the risks include sudden death and dementia.

We also did some other tests to look for metastases that could account for some of the new symptoms. So far, those have been normal. Thanks for your interest.

On Another Note:

In the early days, I wrote here a couple of articles about how to talk to someone with cancer. Actually, it applies to anyone who has gone through something difficult, such as divorce, death of a spouse or child, etc. Coming out of my initial treatment (2 years ago) I noticed how difficult it was for our society to deal with these things. It was not that people were bad or insensitive, but that something within our culture makes these interactions weird. I watched how some old friends crossed the street to avoid talking to me. I watched many times when Denise and I were together and ran into old friends and they only spoke to her and made no eye contact with me as if I were invisible. They would ask how she was doing, but never mention the “C word” or ask how I was doing. It was as if I had just been released from prison for some heinous crime. While it was painful for me, it was simply awkward for the friend and I know they meant no harm. I bet I have done the same to others, which I now regret.

Yesterday, after finishing a 3 mile run to Starbucks, I ran into old friends, Richard and Jody. I had seen them only briefly after I was released from the hospital two years ago. Frist of all, Richard called out my name, before I saw him. They expressed how happy they were to see me. Then, without ANY hesitation, no awkwardness, they asked how the battle with cancer was going. I gave them a concise answer and asked about how their life was going. My point is, it was so healthy of an interaction that it left me feeling human and not like some enigma, of which I suppose to be embarrassed. But, I’ve always have known this as authentic and caring people.

Mike

Published by J. Michael Jones

J. Michael Jones is a writer and PA who lives in Anacortes, Washington. He is the father of five children, who are now grown and out discovering this wonderful world on their own. He has previously focused his writing on non-fiction including medical topics and issues of the philosophy of Christian thought. With the success of his last book, Butterflies in the Belfry, Michael is now moving into fiction with his first novel, The Waters of Bimini.

6 thoughts on “Health Update’s Update

  1. Thank you for the update Mike.  Still praying for the best possible outcome for you, and for each step along the way.  And thank you for the insight on how to talk to people going through something difficult.   Hugs, Robyn

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  2. Hi Mike, thank you for the update! I will pray your numbers stay below 170 as the options do sound scary. Hopefully there are just some ‘wild’ gamma light proteins that can’t follow the rules and or haven’t gotten the memo that they need to get the hell out. Sorry, I hope you take this light heartedly as intended.

    I hope you are enjoying our amazing weather and are able to get out on your boat and view our wonderful wildlife. I bet Greta is happy to go on hikes with you especially now that the weather has cooled. I can’t imagine wearing a fur coat in 100 degree temps..of course I can’t imagine it at any temp. 😉 Keep working on your book..I am looking forward to it.

    Also, keep trying to look at people with a positive attitude. I don’t really understand how someone could ignore your presence. A simple ‘how are you’ would show concern and it would allow you to open up or not at your choosing. And not every hello has to involve a Cancer talk.

    I do sort of know your feeling of being ‘invisible’. I’ve experienced it under different circumstances. Examples would be during large purchases or other business type dealings where a person is speaking directly to my husband with barely a look in my direction as if I’m not qualified or important enough to be a part of the conversation. It is usually from men but some women as well. Many times..I’m actually more ‘informed’ then my spouse as I love to research and make sure we know what we are doing. 😉

    We can all strive to try and acknowledge others in meaningful ways.

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  3. something within our culture makes these interactions weird. I watched how some old friends crossed the street to avoid talking to me. I watched many times when Denise and I were together and ran into old friends and they only spoke to her and made no eye contact with me as if I were invisible.

    You have Cancer Cooties and if you don’t exist, they can’t catch it themselves. Your presence is too much of a reminder.

    Also expect whispers of “you did something to catch it – WHICH I DON’T DO” as they wave their anti-smoking or Veganism as a Magick Shield against your Cancer Cooties.

    I know that because during my first prostate cancer scare, I got hit with “You Eat Meat, Don’t You? You Gave Yourself Cancer BECAUSE YOU ATE MEAT!” (Kicker is, after two-three scares, two biopsies, and an MRI, there is no sign of prostate cancer. Just BPH giving anomalous PSA indicators. Talk about “mixed lab findings” – all PSA and Free PSA levels said 60+% chance of cancer on the nomograms. All biopsies negative, nothing anomalous on the MRI except BIG prostate.)

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    1. I know. People mean well, but I do think it comes from a place of fear that they could get the same and they want to make sure that you deserve what you have, so that they can feel safe that they are doing something differently. It is either you didn’t eat right or pray right. But most, thank goodness, are gracious.

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