Sunday, December 22, 2013

It’s Off to Work I Go!

I went back to work last Tuesday, exactly 12 weeks after my surgery. I was only in for 3 days, as I had my monthly Sandostatin shot on Friday in Boston.  Work was not too busy as we are winding down now toward the end of the year.  My business gets very busy about 4-6 weeks after the end of each quarter.  I still found it exhausting because I have not been in a structured environment for so long.  Just taking mass transit to work during rush hour was tiring.  I’m glad I only started with a short week.  This coming week I am only working for 2 days and only 3 during New Year’s week.  Hopefully, I’ll be getting more stamina and used to the structure again during this quiet time.

While at work, I am not always in control of what and when I can eat.  I am and will be eating out more with less home prepared food.  I have been eating a wider variety of foods now without too much trouble.  I will still bring some food into the office so I can have some control.  I went to a client Board meeting on Thursday and they had a red velvet cake to welcome me back!  Not exactly the type of food I’ve been eating lately but I had a bit and it was a nice gesture! 

On another subject, I tried Digest Gold which is a digestive enzyme when I got my gas issues a few weeks ago.  I found that it helped a lot and I did not have to take it all month, just when I had the problem.  The nutritionist at Dana Farber suggested that I should also take it in advance of any meals when I am out with clients and not in full control of my diet. I’ll keep a few pills in my purse for that.  I’ll keep using the Digest Gold for a few months to confirm how well it works and to see what type of dosage I’ll need long term.  I’m quite pleased that it has worked for this problem when other remedies have not.

All in all, I’m doing quite well now, not fully back to normal but probably about 80% there.  I’m happy that things are going well and I wish everyone a Merry Christmas and happy and healthy 2014.



Sunday, December 1, 2013

Online Cancer Support

Over the course of the last 3+ years, I have “met” a lot of people that have neuroendocrine cancer through online carcinoid support groups such as ACOR and Facebook.  It’s hard to meet many carcinoid patients in person because this is such a rare cancer.  I’ve learned a lot by communicating online with other patients to talk about their experiences with doctors, treatments and other issues.  I’ve also become friendly with other patients who write carcinoid blogs.

Several months ago, I “met” Suzanne Murphy.  Suzanne had had a poorly administered Sandostatin shot and found my blog while she gathering information about this pricey drug.  We started communicating and I learned that she also wrote a blog about cancer (called Gulf Gulf’s blog).  Suzanne had both neuroendocrine and cervical cancer.  Her blog was well written, funny and heart-wrenching at the same time.  I put her blog on my mine and she did the same. If we had lived near each other, we would most likely have met and in person and become close.   Her last post was from the hospital about a month ago.  A few days ago, I was thinking about Suzanne and googled her name. What came up was her obituary. She died on Halloween. I feel so sad about her death. Suzanne was 39 when she died. She leaves behind a husband and three young sons. 

I’ve had other online carcinoid buddies who have died but somehow Suzanne’s death hit me harder.  I guess it was because she was so young and such a great blogger. 

Online cancer friends are great to have.  We share the same disease and understand each other’s issues and thoughts, sometimes better than those in our family or circle of friends.  Nonetheless, an online friend is not physically close. When the going gets rough, they may go offline and you may not know what happened to them.  Sometimes, people go offline and nothing has happened, they just needed a break.  Other times they die and you may not ever know it. 

 Rest in peace Suzanne. You will be missed.