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KaryninMiami

Profile Information

Gender: Female
Hometown: Miami, FL
Member since: Wed Nov 10, 2004, 10:15 PM
Number of posts: 2,978

Journal Archives

Stem Cell Transplant - all systems go

Process started at UM Sylvester Cancer Center here in Miami. Begins with 2 weeks of outpatient procedures and tests pulmonary, heart (already done), blood work, psych evaluation, bone marrow biopsy (scares the crap out of me), 5 days of shots to stimulate the stem cells then 1-3 days to harvest the stem cells from my blood (sort of like dialysis they say). Then I wait until a room is available (they only have 14)- hopefully within the next week or so following the harvest (sooner the better as the risk of relapse is high with my type of Non Hodgkins Lymphoma (AITL T cell- very rare and very aggressive). Then, a 3-4 week hospital stay which starts with 5 days of massive doses of chemo (knocks out just about everything include my entire immune system), then transferring my stem cells back into my body (like a transfusion). Then we wait until my bone marrow starts producing healthy white blood cells. The process actually changes the DNA if it works correctly. But it's a long, arduous, rather risky (mostly because of the risk of infection) process. When released, I'll be recuperating at home mostly for 3-6 months while my immune system builds itself back up. As I write these words, I'm in awe of how far medical miracles have come and at the same time, how daunting and overwhelming this all is (not to mention terrifying). But two expert oncologists at two different well renowned cancer centers believe this is the wise choice as it will increase the possibility of a longer remission or even a cure by about 30-40% so I'm thinking it's worth the risk.

For the next few weeks until I'm admitted into the hospital, I plan to fill my days with as much fun, laughter, good food and wine as possible and surround myself with friends and family that I love being with. Not to mention celebrating how far I've come. And the fact that my Obamacare is going to take care of me all the way through this.

Wish me luck- it's going to be a long 6 months! And if any of you have personally experienced an autologous stem cell transplant, would love to hear from you either here or via PM.

Haha- Rachel revives Jeff Gannon

Anyone else remember him? The gay hooker who somehow made it into W's high level press conferences and was supposesly seen entering and exiting the White House at odd hours? Not to mention the bevy of rumors about who he was sleeping with to get his security credentials? Many thought it was Rove as I recall but we never did find out for sure.

I remember watching it all play out. Good times (except of course for the W part)...
Posted by KaryninMiami | Tue Jul 8, 2014, 09:14 PM (8 replies)

In remission

Received this great news yesterday after my oncologist reviewed the results of my PET Scan. Amazing news and a big relief, needless to say, not to mention the joy of not having to prepare myself for another round of chemo in about 8 days (competed my sixth and last three day round 10 days ago). As I mentioned in my previous post, my strain of NH Lymphoma is very rare and also very aggressive (AITL T Cell NH) and the possibility of it returning is pretty high. The next step, is to consult with a specialist at Sloan Kettering (in NY) and the director of stem cell transplants at Sylvester (Miami) to discuss their suggestions for higher probability of a cure.

But for now, I am extremely grateful that this chapter of this bizarre journey has come to a close and to all of the amazing people in my life who helped get me through this including making sure I was never alone during a chemo treatment and surrounding me with love and healing.

No idea what's to come next but I am taking things one day at a time and remembering to pay attention to the things that matter most- relishing time with loved ones, doing things I really enjoy, focusing more on being mindful (and connected to my spirituality) and compassionate and healing from what was a rather traumatic experience. And eating ice cream as much as possible!

Thanks to all of you who reached out to me when this adventure began back in January and for anyone on a similar journey who feel like reaching out, feel free. Connecting with someone who's "been there" really does make a huge difference.

Diagnosis-rare form of non Hodgkin's lymphoma

Chemo regime starts Tuesday-3 days in a row, 3 weeks off, 3 days chemo for six cycles. Called "CHOPS" chemo protocol. Terrified, horrified, shocked, sad, angry- entire specturm of emotions as one would expect. Keep hoping I will wake up and have it be just a bad dream...
Anyone out there already through this or something similar? Any helpful chemo tips to share? Welcome any and all suggestions and support. Have a feeling I'm in for a long, brutal few months...

Thanks...

Great start to Bill Maher's show

Glen Greenwald (from Rio) speaking on NSA and first panel topic is Bridgegate. Excellent panel (Jennifer Grandholm, Steve Schmidt, James Carvelle). So happy he's back!
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