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KaryninMiami

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Gender: Female
Hometown: Miami, FL
Member since: Wed Nov 10, 2004, 10:15 PM
Number of posts: 2,996

Journal Archives

Joint pain post chemo anyone?

Happy to report that all in all, I'm finally feeling more like myself (3 months post stem cell transplant) - getting stronger and doing more every day.
Besides some occasional waves of exhaustion, I have some pretty intense joint pain-especially in the morning. Hands/fingers, shoulders and knees especially - not unusual following massive doses of chemo. Besides Advil or Aleve, does anyone have any other things that worked for them post chemo?

Thanks so much!

Three weeks home post Auto-Stem Cell transplant

Doing pretty overall honestly. Totally exhausted most of the time and still needing at least one nap a day. Am doing my best to get some type of walking in every day even if it's just in the hallways. Never had this level of tiredness before but it's to be expected. Appetite is totally gone most of the time- occasionally I'm a wee bit hungry but not often so I have to find things to eat that are at least interesting enough to get down. Also part of the process. But, I was thrilled to leave the hospital (needless to say) after 3 weeks. Was a very intense journey- I wound up having some bizarre infection and had to be moved to the ICU for a few days (but it cleared up) and there were some touch and go moments (most of which I do not remember thank goodness). Very blessed to have my sisters with me (they took turns flying down from Boston and NY) and a parade of friends who visited and the care at Sylvester Cancer Center was extraordinary.
It's going to be a long haul- many months before I start to feel normal again and lots of restrictions on diet, being out in public, special cleaning rules and regulations, etc. But my doctor, who heads up the team at the transplant unit at Sylvester, is very pleased and sees no reason that this will not mean a cure.
Anyway, I'm home, on my sofa, watching old movies and celebrating what I hope and pray, is the end of this horrific chapter of my life. Ready to plan some great vacations next year!

Stem Cell transplant starts tomorrow

And I was advised this morning that sadly. the cancer has returned. Although the PT scan in mid June showed remission, 4 nodes of lymphoma have now shown up in this week's scan only 2 months later. This thing is really aggressive. Needless to say, this was more then unsettling news. My doctor, who heads up the transplant unit at UM Sylvester, assured me that he and 2 colleagues, all with extraordinary credentials, independently decided that moving forward with the autologous transplant still was the right decision. Apparently, it's not uncommon for lymphoma patients to go through these even when disease is present because the massive dose of chemo will knock it all out. As there is no cancer in my bone marrow, my stem cells are just fine to infuse after 6 days of chemo. I go in tomorrow (Thurs) at 10am. Will be checking in here when I can with updates and am journaling at caring bridge (PM me if you are interested in following along with my journey there).

Taking deep breaths (and just swallowed my nightly Xanax). With 4 weeks in the hospital looming in front of me, I feel like Piper from Orange is the New Black, heading into the slammer.

Wish me luck.

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!

Nan Rich needs to tone down the anti-Crist rhetoric

I get it that she is a lifelong "true Democrat", unlike Crist who recently became one. I get it that he flip-flopped (and "evolved") on many issues. However, is very unlikely that she can beat Scott and Crist is clearly a stronger candidate. At some point, her negative campaigning is going to put him at risk, causing some on the fence Dems and Independents to tune out and stay home when we need them to be engaged and invigorated about getting Scott out. I feel compassion for her- I really do and believe that she'd be a good Governor but it does not appear to be in the cards for her so hopefully she will gracefully, pull back on the Crist attacks for the good of the state or we risk another 4 year Scott nightmare.

Anthony Weiner is great on Bill Maher tonight

Reminds me of what a powerful, progressive voice he was when he was in Congress. Such a shame he made such a mess of things. He really is a bright, articulate guy. Hopefully he will one day wind up back in politics...
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