4.20.20

Hello Friends,

Hoping everyone is staying safe, well and away from all the Cooties! If you’re a Myeloma patient, I’m guessing CoronaV has not changed your life as radically as for a “well person”, right? We’ve been “sheltering in place”, “quarantining”, living in our “protective bubble”, avoiding cooties and germs since diagnosis/chemo, because we’re so Immune Compromised! Myeloma and treatments have forced us to be ultra aware of cootie cross contamination, so we clean and sanitize everything and everyone always! We were trending before all the current trends!

Remember this game!

Nope, my life hasn’t drastically changed because of Covid19. If you’ve been following my 10 year story, you know my lifestyle and challenges, and my philosophy of “self protection”. So all that has drastically changed for zillions of the “healthy population”, hasn’t really changed that much for me. Yes since my Myeloma diagnosis, I’ve limited my life more than others probably would, but hey, it’s worked for me for over 10 years, and I haven’t been super sick beyond the annual bouts, haven’t been hospitalized, and haven’t had Pneumonia.  

BUT that raises a Very Interesting point, that the news is all a chatter about…. COULD WE HAVE BEEN EXPOSED TO, AND POSSIBLY EVEN HAD CORONAVIRUS/COVID 19, sooner than we were aware, before the announcement of a “Pandemic”? I think back on how I was sick off and on late Dec, Jan and into early Feb! I remember feeling a strange sickness, but I would always rebound in time for my Monday’s steroids, Velcade and Cytoxan. Yes, the steroids would always mask symptoms, and I think that was probably part of the problem of getting and staying sick for so long. I just kept pluggin along, because I have to… I really wasn’t awful until late January, when I finally wound up with a fever for about 4 or 5 days. I remember early Monday morning, before the 40mg steroids kicked in, I felt dizzy, light headed and not well at all. Then the steroids kicked in, and I rebounded. But I bet I was getting sick then, as next day, late Tues night, early Wed I developed a fever, and it was downhill from there for the rest of the week.

I remember being surprised I didn’t have a lot of nose congestion issues, or chest congestion, but I did have a never ending awful headache and cough. Probably fractured a few ribs coughing so much. So many other random symptoms too. I also recall using my inhaler that I rarely, if ever used. Would be really crazy if I actually had CoronaVirus Covid 19!! There are so many articles and posts about it, I’m sure you’ve read it too… Guess I won’t know until a reliable Antibody test comes out.

https://news.usc.edu/168810/usc-covid-19-antibody-researcher-answers-questions-about-testing-in-l-a-county/

https://www.usatoday.com/story/news/factcheck/2020/03/26/coronavirus-fact-check-could-your-december-cough-have-been-covid-19/2899027001/

Well, aside from CoronaV, things escalate daily with my Alz hubby. Tragedy beyond words… but I don’t feel like whining about that right now… well I do, but I won’t :((

I’m suspecting Myeloma is rearing it’s power again, as I have symptoms that remind me of initial diagnosis and other years when my IGA and M Protein escalated. I am tired and fatigued all the time, but just keep going, cuz I don’t have a choice… I have more headaches, neck pain, bone pain, etc. Hate hate hate the awful headaches, neck pains, etc. Which reminds me that I am supposed to go for another head scan… I think I had another lytic lesion(s) my Dr wanted further looked at… so much has happened 2019, 2020… I just can’t keep up with it all… I have a phone appt on the 30th, so I will ask then. Maybe I will email her sooner, as I the headaches last week, and especially this weekend really revved up. Steroids today lessened the intensity thank goodness.

So I’ve been thinking about what treatment protocol I would try next, when my current 40mg Dex, Velcade and 400mg Cytoxan-Cyclophosphamide stops working. I’ve thought about asking my Dr if we can go backwards and try combos of previously used chemos. As you know, I am so scared of new meds because of I am so scared of new, unknown side effects..

Here are some other good links of things I’ve been thinking about…

https://www.myeloma.org/videos/askdrdurie-it-okay-take-vitamin-b12-same-day-velcade-0

https://www.myeloma.org/blog/dr-duries/are-women-risk-myeloma-if-they-sit-too-much

https://www.myeloma.org/cure-blog/future-looks-bright-including-cure-myeloma

LOL LOL
Take care everyone, and I hope you and your loved ones are all doing ok in your “safe at home” bubble. Please let me know how you are, and for my Myeloma friends, please let me know the various treatments you’ve been on, and any recommendations you have for my next step!