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How's it goin' ZsaZsa?

Posts: 1105
Joined: Jun 2016

Been thinking about you and hope all is ok!

Posts: 553
Joined: Oct 2018

Very well!  Thanks for asking.  I was taking a break - I'm sure everyone understands that.  So far, no recurrence of the UPSC, and side effects of chemo and radiation are receding.  Bowel function not what it once was, but a LOT better.  Just have to avoid eating too much salad/fruit/veggie.  Honestly, I cannot believe how GOOD I feel compared to when I was going through the chemo and radiation.  For those who are reading this who are newly diagnosed with UPSC, there really is light at the end of the tunnel.

We sent my high school son to live with his older brother in Utah, so that he wouldn't have to be on total lockdown isolation.  My husband, college daughter, and I have been on total isolation - don't even shop for food (kind neighbors and friends do that for us).  But the silver lining is that our cape house, right near family,  which was rented for the entire summer, is vacant because the client could not come, so we've been able to at least go to the Cape a lot.  I have been impressed  to serve as crew member for the Cape Cod Knockabout races, so no just sitting pretty in the boom on the down wind legs for me - I'm gonna have to do some of the work!   First race is Sunday, and the captain, who is so solicitous of my well-being otherwise, is a cranky, mean, competitive SOB when he's skippering.  Gonna be interesting, for sure.  So glad he chose me - not that there was any choice.  Daughter flat out refused, even though she was trained up in it as a kid, leaving me or the dog - and dog doesn't have opposable thumbs.  We also drove  to the White Mountains for a couple of days, did some hiking (the old gray mare most definitely AIN'T what she used to be) and drove up Mount Washington.  Did it all while maintaining social distance.

As for the splenic marginal zone lymphoma (not a side effect of the UPSC treatment), I'm on rituximab, an antibody infusion that kills ALL my  B-cells, the malignant ones and the healthy ones.  I responded well to the treatment.  It's controlling the hemolytic anemia and autoimmune thrombocytopenia.  The B-cell lymphoma specialist at Yale is pleased with the response, says it will work for anywhere from one to seven years.  I have no side effects from it other than that I'm totally immunosuppressed, have no ability to fight viruses at all, hence the total isolation, but hey, I'm not the only one, because of coronavirus!  So overall, life is pretty good right now.  I just try to put it all out of my head, hence the break.

Posts: 1105
Joined: Jun 2016

I get the need for a break, but knew you were high risk with all that's been going on. It's good to hear that you are hanging in there and not from the ceiling! Wink

CheeseQueen57's picture
Posts: 936
Joined: Feb 2016

Sounds like you're livin life. Congrats. 

TeddyandBears_Mom's picture
Posts: 1744
Joined: Jun 2015

Good to hear from you zsazsa1. So glad to see such a great update. 

Love and Hugs,


Tamlen's picture
Posts: 294
Joined: Jan 2018

Totally understand the desire to take a break from the forum and thinking constantly about cancer and just go back to living life for a while. I'm SO glad you're in the place to do that and that you've made such good use of that time. I still think of cancer every single day, but it's more like a shadow that's always with me now, instead of a giant standing on my shoulders.


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