Want to talk about Multiple Myeloma: Anyone else?

I discovered I had MM last July. I have gone through chemo, radiation twice, and a stem cell transplant. It will probably be a year before I am feeling closer to normal again, but that will be a new normal. I will probably not be as active and healthy as I once was, but I should feel pretty good during remission. There is still fatigue, and back pain, but life is much better pain wise that it was. There is drepression that hits me since I was so active and now not so much. Hopefully this will go away and I can enjoy life close to what I had. Hope this helps.

Seriously, you’re doing great! You’ve had so many unexpected things tossed at you these past few months with a new diagnosis, new meds, new doctors, medical challenges you didn’t expect to face and abrupt life style changes! I’d say you’re handling this all quite well. But, increasing the positivity level while decreasing the worry level will help even more. ☺️.
Aw, I’m really sad for you with having to cancel that trip to Amsterdam! It sounds fabulous and I’m so sorry you have to miss it this year! But I still see this trip and others in your future. ☺️
Congrats on the NYT Sunday Puzzle. We no longer get a newspaper at our house and working puzzles online or in a book just don’t have the same feel for me. I love the folded paper in my lap and my favorite pen. But I end up with crossword puzzle books just to keep me in the loop. I am addicted to Wordle online though.

Ok, the 100 days of isolation isn’t really total isolation. You’ll pretty much follow what we did during the height of covid. You will need to be cautious with no hugging, smooching grandkids, avoiding crowds, wear a mask, sanitize your hands and surfaces, avoiding freshly tilled soil and no gardening. There will be some precautions with foods that are raw, especially and deli meats are taboo. There is no 3 second rule for dropping something on the floor, brushing off and eating it! But all of this will be addressed with your pre-transplant classes. It’s really not as challenging as it sounds.

My suggestion is to stay off the internet for some of these things about transplants.

Have you read any of Louise Penny’s Inspector Gamache series?

The pharmacy said would call when received the prescription. Guess it is in process but I will not be happy until I know it is shipped. Tomorrow is my dictor appointment so will talk with her about scheduling as would be good not to be down to the wire. It is already Wednesday and need by Friday so still a bit stressful for me. since the numbers have come down with only one month, I am hoping that will be true for this second round! Revlimid makes me so tired but worth it. I just wish I did not have the bone issues as 24/7 I feel the effects of the lesions. Not terribly painful but z sort achingly uncomfortable which is adding to my stress. Maybe with some better weather. Will see if my doctor can schedule as you do so that there is more time for processing the labs. Not sure why some are sent to Mayo but that is what they do!

Confusion concerning FDA recommendations.
Following 4 Moderna vaccines and Evusheld, is it recommended to also receive the additional booster for those immunocompromised and over age 50?

Well the myeloma labs were posted and there is some good news. Numbers are down so hoping with a few more months perhaps another remission opportunity! Yes worrying was wasted!!!

Seems what was sent was okay so I should be getting it by Friday. I wasn’t certain what they needed and the myeloma tests are sent to Mayo to process which adds to the time.

I am reading spy novels now although like to read series so the next one is waiting but have finished all the ones in my queue so guess will have to find more or another topic.

A bit sad as got the notice for the bike/barge Amsterdam tulip trip I booked in January 2020 and finally cancelled. Sigh! Fine before I knew I had this but always hoped somehow we could still take! Since so much myeloma damage in the past 4 months, cannot even bike so just as well.

Hoping for some good numbers when those tests come back. Guess I have not really faced up to the actual reality of the myeloma. I know I need to be more positive and try to focus elsewhere but so hard for me. Did the NYT Sunday cross word puzzle! That took a few days! Have yet to try and paint or journal.

That is why I retired later than I should have as it filled up my time and mind!

I guess I did worry for nothing as it did not come down to the wire as I thought it might!!!

I was reading up on transplants again and saw the 100 days of isolation to recover one ‘s immune system!

Well the myeloma labs were posted and there is some good news. Numbers are down so hoping with a few more months perhaps another remission opportunity! Yes worrying was wasted!!!

Hi @tml I was just thinking about you today and wondering how your weekend went. Some of the test results you’re waiting for can’t always be rushed. I know, waiting is the pits, especially when a prescription is dependent on the outcome. Hopefully the results will be in tomorrow. From @gingerw’s experience with the same drug, it’ll be shipped overnight. So I think they’ll arrive in a time for you. ☺️

I have to share something a fellow transplant cohort of mine, who is in a support group with me, posted this today on Facebook.
“Worry is a total waste of time. It doesn’t change anything. All it does is steal your joy and keep you busy doing nothing.”
It served as positive affirmation for me today. I would like to encourage you to focus on something positive and joyful for the rest of the evening, whether it’s a chick-flick comedy on Netflix, playing a board game, grab a new mystery to read.
You said you’re an avid reader. What’s your favorite genre?