Big Pain, No Gain

This is an unauthorized blog post, but an overdue one nevertheless. It's been a painful couple of weeks for Becca. She started taking the Votrient pills (mentioned in her last post) this week, but it will be a good six to eight weeks to see whether they are doing the trick. Meanwhile the meter is running as the #$%&!@% insurance company denled coverage. We're appealing. Another painful process.

The physical pain is sciatica, an intense deferred pain centered in her right upper thigh area, not near the abdominal tumors. Two theories are a blood clot or bone metasasis. Tomorrow Becca gets an X-ray and a sonogram to see if anything shows up. Then there's the pain medication, which has been ramped up from Vicodin to Dialudid to, as of today, Dialudid and Methadone. Serious stuff, and she is not even trying to kick heroin. That's on top of the Adavan for anxiety, nausea and muscles, and God knows what else.

My mom used to take Adavan during her sunset daze. She also described painful people as "pills" during her glory days. I used to think that was a funny, jaded expression. Now I'm not so sure.

Steve

unexpected news

Last Thursday I got disappointing news that the chemo therapy protocol that I am on is not working. The tumors are growing in both my pelvis and back. This is contrary to the encouraging news from few weeks ago that the tumor on my back was shrinking. After a few days of shock and despair, I contacted Dr. Sabbatini, the sarcoma specialist in MSKCC in NYC and he heavily suggested a drug call Votrient. Votrient is a newly approved FDA drug that is used for renal cancer and is in phase III studies for sarcoma. It's not a chemotherapy but a tyosine kinase inhibitor which blocks proteins, I don't understand it fully but I know the drug works very differently than chemotherapy. I may have some hoops to jump through to get Votrient but I am pretty certain I can get it and I am doing everything I can to expedite the process.

I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.

I hope next time I post I will have better news.

Becca

it's all about the food

I am eating eating and still look emaciated. I feel better than I look, thanks goodness. I am a roaring 105 pound, and pretty much eat continuously throughout the day, and why do I look so skinny? Don't know, but I am working hard on gaining weight any way I can. Starting with my morning breakfast shake of hemp milk, ground, flax seed, omega 3 oil, ice cream (or Coconut Bliss), banana, dates, berry concentrate, greens mix, protein powder, whey powder and vitamin C goo, whew! I haven't calculated but I think that's a lot of calories.

I have a few more days of home hydration through my port and than I am free!!! I feel suspiciously good, and waiting for the other shoe to drop, maybe it won't, fingers crossed. So far I have had no nausea, no fatigue, no pain, and my digestion is working well. Yes! I can feel the tumor on my back that Dr. Tracy measured two weeks ago and it's definately getting smaller and softer.

All things considered, things are good

Becca

She's Back

Sinead O'Cohen

Cruisin'

Today on 2 North I could barely keep up with Becca as she did her ward wheelies, with bags in tow no less. That was after she wolfed down a Japanese steak lunch. I missed high tea, but I know it included stewed fruit and tapioca pudding. Man, it was like John Belushi at the Samurai Deli on SNL. What's next? "We ah here to pump... YOU up!"?

OK, maybe I'm exaggerating a bit, but all signs are good. Round 2 looks a whole lot different than Round 1. Stay tuned.

Go Celtics!

Encouraging News

After a long wait at the cancer center to see Dr. Tracy, at least it wasn't three hours like last week, I got the good news that the tumor on my back has shrunk a centimeter! YES! this is VERY good news.

Becca

chemo sucks!

This post is long overdue, I know, I have left many of you hanging, sorry. It's only been a few day since I feel that I have the energy and focus to type. With each day I have felt better since my release from the hospital on May 31st. The first few days I had extreme nausea, then unbelievable fatigue, and all the while stomach cramps and a digestive system that couldn't quite pull it together.

Now just two day before I go in for my second round I am feeling the best I have, not perfect but okay. The last few days I have taken short walks around the neighborhood, its been such beautiful weather, and the flowers are breath taking! The plan is to go into the hospital early on Wednesday and be out by Sunday. In some ways I think it will be easier this time just because I know how to "work' the system, which med to ask for and when, and certainly the transition home will be easier, I now Know that I take the nausea meds whether I feel nauseous of not, big mistake last time not staying on top of that!.

Finally, I have the best group of friends and family EVER! I have been surrounded with the most loving, informed and caring group of people and each and every one of them have gone the extra mile to help me with whatever....holding throw up buckets, driving to appointments, delivering meals, keeping me company, I could go on and on. You guys rock!

Abby is off to Camp Kesem, the "cancer" camp, this week and having the time of her life as she has for the past 2 summers, she is home on Sunday.

Visitors in the hospital are welcome, just call before you come.

xoxo,
Becca