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I understand your concern for you son and the trauma of seeing your body failing you. I was just 7yo when my daddy was killed in a coal mining accident. It was such a traumatizing experience to me at that age, I mourn him yet today, 72 years later. In 9 more days (August 20th) at 11:45am, he left me forever and it won’t be to much longer before I join my family again.

You description was very scary to me because it’s happening to me exactly as you described your symptoms. It’s only been about 2 months since my lymph nodes started acting up. Like with yours, certain ones are bothersome. The left one under the jaw and neck, makes it feel like I have a sore throat but its not inside my throat. Both armpits make me feel uncomfortable when my arms are down but eases up when I put them up in the air. The right groin one is scaring me, it was the first one to act up besides the one under the left jaw.

I researched enough to know I’m headed for trouble. What makes this so messed up is the fact this all this is progressing directly from my Kappa light chain IgM MGUS rather than from the bone marrow or lymph nodes. With so many rare things wrong with me, that’s terrifying because it means I could be developing a very rare form of Waldenstrom Macroglobulemia which is an extremely rare form of NHL. If it’s true, I’ll be 1 of 3.5 people in the United States that have this form of NHL. It’s incurable, aggressive, does not go into remission and very lethal, over 80% die from it. That’s why I purchased my burial plan 10 days ago and picked out my headstone.

How old is your son? Try not to focus on the negative aspect with your condition. Stress is a friend to cancer. Try to do more things with your son, teach him things you may not be around to when he’s old enough. I once gave this advice to a man who’s son was taken away from him with no visitation. I told him and now you, plan for the occasions that you won’t be there to see them with him. A birthday, Christmas, graduation, whatever occasion you deem important between a parent and a child. Mark the occasion on a card and put a message to him from the future you. Then store them all in a place were he can’t discover and leave the whereabouts with your legal will. Hope this makes you feel just a little happier knowing you’ll be with your son in spirit if not in person.

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Replies to "I understand your concern for you son and the trauma of seeing your body failing you...."

That prognosis sounds really scary, so I can understand your actions. At the moment I am in the lowest risk group, but I'm neither taking that for granted nor trusting that things will stay that way. My son is a two and a half year old bundle of energy, and the poor little guy understands at some level that his mama is sick. He started asking if I was ok even before my diagnosis. We're making it a point to get out and do some of the fun stuff with him that we couldn't do up until now because of covid restrictions before my husband starts his new job. I'm making sure photos are taken, of course. The card idea is a better variation of an idea I had. Thank you for that. Exhausted momma signing off for now…