Just curious - how is everyones family handling this?

[KaryninMiami]

7. Clinging to hope mode is a big part of it

As the person with cancer, I can share a bit about what it feels like. I am thankfully, currently in remission. Diagnosed with an aggressive and rare T Cell lymphoma in Jan., I did 6 months of chemo (3 days in a row, every 21 days). I tried hard to keep cheerful and hopeful - fortunately the chemo was only lousy in the beginning and the last 2 treatments. I kept busy, walked almost daily (except on chemo days), cherished every moment with friends and family (and my angel caregivers who never let me go to chemo alone) and did my best not to ever let go of the hope that I'd be cured. Some days were easier then others frankly. Some days, I was sad and scared. And lonely too (even with my amazing support system of friends and family)

The chemo put me into remission so my oncologist had me consult with 2 T cell specialists to discuss next steps- one at Memorial Sloan Kettering NYC and one here (Miami), director of the Transplant team at UM Sylvester Cancer Center. Both suggested a stem cell transplant using my own stem cells), fortunately the cancer was not in my bone marrow. Both advised that this could extend my chance of a cure by about 40%- the reality is that statistics on my type of NH Lymphoma are not great.

STC scheduled for late August. The day before admission, my doctor called to report that my cancer was back but we were still moving forward. I remember my hands shaking as i listened to his words- but he assured me that the amount of chemo needed for the transplant would destroy those nodules that had lit up the pet scan. I was on some level, scared shitless but took a deep breath and reminded myself that this was the way to a cure. Period. Was in the transplant unit at Sylvester for 23 days-most were not horrible, some however, were pretty bad. But I got through it somehow. Journaling at caringbridge.org helped a lot (can send you the link if you are interested). As did my amazing friends and sisters who came down from NY and Boston while I was there.

Recovery was not easy. I ran fever on and off (mostly on, low grade) for most of the first 3 months and was miserable and depressed. Felt like I'd never be well again- worried the transplant had not worked. After so many weeks with fever and a million blood tests for infection (at least 100- they tested for everything they could think of), my doctor that relapse was the only answer. After 2 weeks of utter panic, they decided to schedule a pet-scan. I assumed by then, I'd be dead by the end of the year (or would need another transplant which physically and emotionally were too big for me to wrap my arms around at the time). Told one friend that I was sad to be missing Hillary's inauguration. Spent most of the time on my couch watching tv or napping, not eating, completely defeated. Plus, the fever was making me week. But the pet-scan, much to everyone's surprise, and the bone marrow biopsy (don't get me started on those horrible things), were both CLEAR. Whew.

Today, 4 months post transplant I'm feeling pretty well. More like myself, walking most days and starting to actually allow myself to think and about having a future and about my next chapter (am on disability- not ready to work yet). My hair is growing back slowly, I'm meditating, taking yoga (gentle restorative) and even drinking wine on occasion. I have some annoying/painful arthritis from the chemo and insomnia (on some inner level there's still stuff churning around) but overall, doing great.

However, running constantly in the background like a program running on a PC, is this message reminding me that this may not be real or may be temporary. The shadow of relapse is always there and I often have to fight to push it out of view. If I give it too much attention, fear sets in and I become frightened of planning for the future or thinking about getting a new job ("who would want to hire a high risk employee anyway?&quot . Trying to plan a vacation for January but nervous about a commitment that short term. Next pet-scan is in March- doing my best to cherish every moment in the meantime including every sunset and every hug. Living life between pet-scans is a common challenge of cancer patients. It never goes away I've been told.

Here's a wonderful piece I came upon a month or so ago which really hit home for me- may be of help for you to better understand what it's like to have cancer. http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

Sorry to be so long winded- guess I got carried away.

Please remember that are not alone-- breathe deeply (download calm.com on your phone or computer- it's great for "checking out" once in a while- you'll see) and most importantly- remember to take care of you too (and consider Xanax- it's a dream drug- or pot) and keep us posted on how things are going.