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KaryninMiami

Profile Information

Gender: Female
Hometown: Miami, FL
Member since: Wed Nov 10, 2004, 10:15 PM
Number of posts: 3,048

Journal Archives

In a pretty purgatory (update)

Home now for just about 8 weeks. My living room/bedroom suite that my amazing friends created (I can see the bay and the birds) has worked out perfectly. Most days are filled with delicious food and wonderful visitors which can be overwhelming but I'm grateful for every visit. I'm either in bed or in my lounge chair (I have to get there by a special lift because of the paralysis). I don't go out really except for a weekly trips to the hospital for a blood transfusion. 24/7 care now needless to say.

The thing is, I'm not getting better. I'm worried that the transfusions going to start coming more often which could mean eventually, they're just not working at all. They're barely working now. My red blood count drops from eight or 9 to 5 or six within a week.
I'm coughing a lot from- well actually I don't know where the coughing comes from but it can be relentless not to mention annoying when it happens just after eating or taking medication.
And then there are the fevers, which come every day usually in the afternoon and they are furious-102 or 103, barely responsive to Tylenol so usually I am being iced down a few times a day to bring it down to normal range. Between the transfusions and the fever it's all totally exhausting.
No idea how long I can go on like this which shoe will drop next, what to expect etc. Hospice is being great although I'm still hoping we can find something to try some treatment just to prolong my remission since cure is impossible at this point. It may be too late.
Anyway thanks to you all for being there and listening. I'm not done fighting but I'm get definitely getting tired..

Update (not great news)

Unfortunately it's been a rather miserable few months. In mid Feb, I checked into the hospital at the point that the fever was not responding to Tylenol and the water weight (45 lbs) made it impossible for me to move around. That last chemo treatment literally flattened me. It took days to get me stable with transfusions of various types. But the worst part was the pain as my skin had stretched tightly to accommodate the water. So, between the pain from neuropathy in my feet and the excruciating pain from the stretched skin, I just wanted to die. Three weeks later most of the water weight was gone but I was unable to walk. Being off my feet for that long had weakened my legs so much they could no longer hold up my body. I was transferred to an acute rehab center in the hospital where for three weeks we did everything possible to get me to walk it again. But it was not to be. Spent another three weeks in the different rehab where once again I was still unable to walk. The neuropathy sadly had crept up to my chest and took over my hands. Turns out the chemo treatment in February had been too strong for me. And because I'm so weak, I'm not able to undergo any additional treatment for the cancer so I signed into hospice. Last Saturday I returned home after being away since February. My living room, thanks to my amazing friends, has been transformed into a bedroom suite. I have 24/7 care now and am adjusting to my new life. It's very weird but so great being out of the hospital and rehab.
If the neuropathy goes down significantly, I still might be able to have some treatment which would be great. I'll probably get thrown on hospice but we'll cross that bridge when we come to it. The good news is that as of three weeks ago, CAT scan showed no cancer. So now it's a race against time. Will the neuropathy diminish enough for treatment and if so will this happen before the cancer has spread? Or will I just live out my remaining days bedridden at home looking out over Biscayne Bay, surrounded by my friends and loved ones? Time will tell.

So it appears I have relapsed.

My fever (mostly low grade) returned a few weeks ago. I'd had a nice, six week fever free run over the holidays. Just prior to that, my thyroid basically stopped functioning causing me to gain 40 lbs in about 30 days-,without changing my eating habits. But that was certainly odd and disturbing. Some of the weight is water- in fact, the last few days my body has filled with water like a ballon- very scary and painful. Something strange was definitely going on.
We moved up my scheduled Petscan from late Feb. to today to rule out relapse. And the preliminary report shows, sadly, that my lymph nodes appear to be popping up again. As they did just before my auto transplant in Aug.
I'm still in shock-may wind up being a two Xanax night. If this is what it appears to be, I have another long, torturous road ahead probably culminating with an allo (doner) transplant which as I understand it, is the only chance for a cure.
Letting it all sink in- it's a lot as you can imagine. Will start researching alternative treatment options as well and if anyone has any info on holistic/homeopathic therapies with a history of success for TCell Lymphomas (or any lymphomas actually), please send them.
Damn it all- was really hoping I couid close this chapter and move on to something new and fun. Fuck cancer.

Namaste

New Years updates/check ins from warriors and care givers

Hi all-
First of all, wishing everyone on this journey a happy new year. I for one, will be thrilled to bid farewell to 2014 which was by far, the most challenging and difficult year of my life. Ironically, my diagnosis happened the second week of January 2014, which means it's about to be my first anniversary. A full year of managing through some really difficult days as well as some extraordinary life lessons. For many of you, I realize one year is but a drop in the bucket considering how long you've been dealing with cancer either as a survivor or a care giver.

Many of you have been incredibly kind and supportive as I've moved through the different experiences and procedures of my illness. I am wondering how everyone is doing now and where you all are (those who feel like sharing of course). I also want you all to know how much I appreciate I appreciate this very special community and all of your wonderful messages and the amount of caring and support that this group is just brimming with.

Check in when you have a minute. And to all- a toast to a healthy and happy 2015.

Cheers!

Karyn

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.
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