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Want to talk about Multiple Myeloma: Anyone else?
Blood Cancers & Disorders | Last Active: Nov 10 6:24pm | Replies (414)Comment receiving replies
There are antibodies that the body makes to fight diseases. There are five kinds IgD & IgE are very rare. The other three in descending order of rarity is IgG, IgA & IgM. IgM is rare compared to G & A and sadly that’s the one I have. Another classification is Kappa or Lambda. The last classification is light chain or heavy, which part it was formed from. Think of it this way, see the letter “y” the two upper parts and the bottom part. The shorter ones would be light chain and bottom part would be heavy, if I remember correctly.
Now in the immune system, you have two cells that are the fighters of the body, they’re “B” cells, they’re the first line of defense. Then theirs “T” cells, these cells are killers cells. They were made from having other diseases and remember how to kill the invader’s. With me so far? Now my problem is I have Kappa light chain IgM MGUS. Google MGUS because I forget how to spell its meaning. My MGUS was most likely caused by a weed killer I used near my garden and ate the tainted vegetables for over 30 years. I also believe that’s why I have these precancerous cells roaming around my body. My brother got Multiple Myeloma from being exposed to Agent Orange and died from it in the 90’s.
Understand so far? My bloodwork shows my “B” cells are being reproduced mutated and crowding out healthy ones in my bone marrow. Which is also showing my lymphocytes are being produced below normal in numbers, (not good), while my neutrophils are being produced with above normal numbers (not good). What does this all mean, my immune system is compromised and is fighting a losing battle against a strong and dangerous opponent such as cancer. What type, the two I’ve already mentioned Non Hodgkin’s Lymphoma or Waldenstrom Macroglobulemia, NHL & WM for short.
Now, depending on how my MGUS progresses, which my last bloodwork in May, shows it’s going the wrong way, it could progress into a more dangerous form of NHL or WM. Right now, my blood is in the 1 in a million range that others have the same condition, meaning only roughly 335 other people in the entire country has it like mine. If my MGUS progresses yet a very rare, my statistics changes to 1 in 3.5 million or roughly just under 100 other poor souls in the United States will have it like me this year. Ya know what’s crazy, from all the new symptoms I’m presenting, it feels like it’s heading for the worst possible scenario. I even wrote on my medical calendar on June 4th, just 7 letters the makes 3 words “I GIVE UP!”
It’s a good thing you’re a therapist because I’m crying right now after writing all that because my heart is so fragile, its read to stop any second. Seriously, I was born with a 1 in a million heart birth defect known as WPW or Wolff, Parkinson, White Syndrome and my doctor warned me I could die between the first half and the second half of a heartbeat. Fantastic huh? I always tell a new doctor that I’m a “Freak of Nature” and to throw away your textbook knowledge because I’m not in it. Sorry for taking up so much of your time. I wrote a poem a few years ago that ends like this, “If this is how I have to live, I think I’d rather die!” Seems very appropriate because of the way my life has turned out, health wise.
Disclaimer: This is NOT a suicide admission.
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Sweet spirit,
First, thank you for the coherent explanation. You are a good teacher! Now I understand enough to learn more, if that makes sense. You must be terrified. It seems like so much is stacked against you....and it is. It is so important to acknowledge your fear and pain, while trying to ignore the ignorant but well-meaning folks who spout platitudes such as "It'll be OK. I have a feeling." or "Miracles happen." I just wanted someone to admit that things SUCK, that the diagnosis is terrifying and that they are scared along with me. Hey! I didn't want to be a cancer hero yet there seems to be some expectation for that? Have you noticed?
My newest caregiver recently lost her last client to Huntington's. It gave her a unique perspective of living with a terminal illness because there is no cure for Huntington's...at all. She not only supports me to live each day the way I want to. You'd think that, as a therapist (especially as a grief therapist) I'd know this stuff but woah....is it ever different when the therapist is also the patient! 1) Try to put your body and spirit FIRST on your To Do list and do what you want to do. (This one really relieved a lot of the "shoulds").
Eat ice-cream, stop somewhere you always wanted to but were always in too much of a hurry to, go fishing with little marshmallows instead of worms 'cause even worms should get to eat what they want to before they expire! and best of all, and only if you want to, yell the "F" word (actually research shows that yelling profanity actually reduces pain but substituting "shucks" for "shit" doesn't count. Do, be, think, what you want to do, be, or think. Don't waste your energy playing the polite A+ cancer patient game. Speak your truth...be real with yourself and others.
If you can, take some time to think about the world, the universe or whatever else seems like it might give your mind something interesting to chew on besides cancer.
As for me? I also am ready to go, and no....this is not a suicide note! It's a "I'm tired of fighting" note. I feel that I've allowed myself to do a whole lot of the things I wanted to, and now I'm learning to give myself a "give up/pity party" day.
Somehow I found some peace in that?
Now, what works for me doesn't work for everyone. I'm blessed in that I can't work (can hardly walk with all those damn fractures) so I have had a lot of time to contemplate the nature of the universe (and whether or not I can live 100 percent without plastic). And, today was a good day for a change although I know that most likely tomorrow will suck. So today I choose to live, tomorrow I'll probably allow myself to let go for the day. And that's OK. If you get down on yourself for thinking like that, I hereby give you permission to DO WHATEVER YOU NEED TO DO to feel better. And sometimes, taking a break from trying to be a cancer super-hero is actually a good thing.
I guarantee it is going to be a hard, bumpy ride, but it could end up being a series of great lessons between the sucky bits. I wouldn't wish this on anyone, and I hate that, after losing your brother already, you have to go through the complicated and difficult journey ahead of you. I so wish I could help you through the "been there done that" part, and I'd love to communicate with you by some method that protects our privacy. Cyber-geezer here, unfortunately. My awesome computer skills sort of disintegrated when I had a stroke a few years ago. Lost some skills, but gosh I'm a lot more relaxed now...weird, huh? LOL! So if you think I could add something positive to your life, I would be honored to be that support for you. No judgment, I'm not religious, and I truly care even though I've never met you. I am sending you a ton of the very powerful energy I seem to have earned somehow from living through painful and scary experiences. Now, here come the loving energy.........love, even more love, support, a good laugh, truly caring, a hug if you are in the mood, a cuddle from my wee dog, a warm beam of sunshine, sparkles on the water in the bay, a soft hand to hold yours while you go through a scary test, and hope...that whatever happens you will end up in a peaceful place even if it is in your living room and it is only for the afternoon.
I'll be thinking of you (as I have been since I first read your post replying to mine).
Karen