The last week has been very interesting. I went back to clinic on tuesday to find out that my platelets had dropped to 3,000. This is dangerously low. For those of you who don't know, platelets are what make your blood clot off. So when you get a cut the platelets help you to stop bleeding. When you have low platelets--- like I do, It makes you much more susceptible to bleeding, bruising, etc. The doctors told us that the dropping numbers could be attributed to a number of things. First, it could be a virus that is killing off the platelets. Second, it could be a platelet antibody that eats the platelets. Third, is GVHD. And dropping platelets could also be a sign of relapse..BUT the doctors assured me that if it were relapse all of my other cells would be dropping off.. which they ARE NOT. Just to make that clear. But when they mentioned that of course I freaked out. But after they reassured me I felt much better.
So they did a number of blood tests on me, testing for viruses. I got to do a lovely nasal wash that feels like they are sucking out your brains. I don't recommend it.
So today (friday) we went back up to clinic to see if I needed more platelets after my last transfusion. My platelets had dropped to 2,000. Not good considering the low end of normal is 150,000. But they came in and said that some test results had come back, and told me that I had Epstein-Barr virus (EBV), HHV6 virus, AND a platelet antibody. So.. We can attribute my diminishing platelets to those three little boogers. But I feel pretty lucky to have viruses rather than the other options.
The good news is is that the treatment for both EBV and the antibodies is the same medicine. It is called Rituxan, and can make you feel sick for a day... but isn't near as bad as chemo. So today at clinic I received a platelet transfusion, and my first of 4 doses of Rituxan. The Rituxan took 4 hours to go in, but they assured me that it would only take two hours from now on. With the combination of the platelets and the medicine, we were at clinic for a total of 8 hours today. It was a very long day.
Sorry I have taken a while to update, hopefully the medicine will start kicking in and my platelet problem will be fixed. I am very grateful that we were able to receive answers today. Thank you all for your prayers, I really appreciate it.
Rachel
Rachel,
ReplyDeleteI'm glad they figured some of it out and hopefully you are on the upswing!! And i am feeling really selfish right now. I saw you yesterday and had no idea you had such a long day. I was just in and out and on my way. I hope you know we love you and still pray for you every day, expecially tate and carter. see ya later!
Oh, I am SO glad they found viruses. We love you Rachel! Get better quickly!
ReplyDeleteWe're glad you have good doctors looking out for you...you are SO brave.
ReplyDeleteAhhh man! That's crazy the platelets are soooo low. I'm glad it's attributed to viruses and that you can get it taken care of.
ReplyDeleteP.S. My lucha shoes came in the mail today. Love them! (Benson's sister is friends with one of the guys so I got a discount. Sweet!) It was crazy when I was on their website and clicked on a link and there you popped up!
Rachel - so sorry to hear about the platelets, but relieved that it wasn't caused by something worse. Keep fighting - you are amazing. I'm still putting your name on the temple prayer roll every week, until you are back to 100%. Love you!
ReplyDeleteOh my gosh, I am so sorry you are having to go through this, but grateful for the virus! I hope you feel better soon.
ReplyDeleteAs strange as it sounds, we are so happy to hear about the virus and antibody! :) We have been praying that it wasn't GVHD and so (while this is no walk in the park for sure!) we're happy to hear this news. Hang in there! I hope you get feeling better soon!
ReplyDeleteI'm so happy it turned jout to be the greater of the three evils! We have been thinking of you and sending up lots of prayers. Hopefully this virus will pass quickly. Lots of love!
ReplyDeleteI just found your blog. As a fellow cancer survivor, my thoughts and prayers are with you.
ReplyDeleteAlso...Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blogs Lists” with over 1400 other personal cancer blogs at www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources, reviews and more.
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