Bag Lady

I’ve let a long time pass once again since writing to all of you. So much has happened in the world and so much has happened in my life. It becomes overwhelming to try to sit down to write. But – I’ve put it off long enough…

As you know, the election did not go as I was hoping. This has been tough on our whole family. We were all very invested in Hillary. Her compassion for our family, alone, was plenty for us but knowing that she had that same compassion for millions throughout the US, well, that’s who we wanted to see in the White House.

Fortunately, in the midst of our sadness, we received two lovely letters from President Obama. 

These beautiful words congratulating the girls for their work on their b’not mitzvah coupled with his words showing his dedication to the eradication of cancer warmed my heart and helped me become inspired once again.

As for me, I’ve had a rough go lately. I now have 2 additional bags attached to tubes on my kidneys. They don’t know why my body is unable to urinate normally. They can’t see anything obvious on my scans that would cause this trouble. This is distressing because it means that they don’t know how to fix it. And – if we can’t fix it, then I’m looking at a life with 3 bags attached to me (I still have my ostomy bag). I am pretty distraught about this. I know that I’m supposed to look at the big picture – keep my eye on the prize of keeping cancer in check – but it’s not that easy. I also continue to struggle with a lot of pain and, about a week ago, I was in the hospital because I had a serious infection. I was able to go home after 5 days with IV antibiotics, but it was still very scary. I just pray that the infection doesn’t come back again anytime soon!

I am still on my immunotherapy trial (in fact, I’ll be heading back down to Stanford later this evening). My next scan isn’t for a month or so. (The last scan showed that my tumors were stable! I am having some of the best results of all of the study participants.) Hopefully, my body is fighting away, ridding itself of this horrible disease!

In the meantime, I am going to try to get someone to figure out what is going on with this bag situation. Both urology and interventional radiology claim that everything in their purview is just fine. (Obviously, something is not fine!!) Hopefully, I will get to the bottom of this very soon – since I do not want to be a bag lady!!

Looking back on this blog, it seems a little depressing. That was not my goal. I was simply trying to update you on the latest activities, which ended up being quite challenging. At the end of the day, the most important thing is that my tumors are staying stable and that I continue to lead a full and vibrant life.

Whether it’s cancer, bags or pain – I will get through it. Heck – I have a lot of living to do. We’re planning to go skiing, to a bat mitzvah in Santa Barbara and so many other adventures. Yesterday, the girls and I marched in Sacramento, knowing that marches were taking place all over the world. I was marching! And – I will continue to march and defy the odds.

I passed the 9 year mark and am heading on to year 10 since being diagnosed. Pretty amazing, huh? I told my oncologists that while they’ve done well so far, I expect to be around for the next 9 years!

I hope that all is well for you. Thank you for continuing to keep me and my family in your prayers. Your strength helps us be our best selves and provides us with the will to continue on this difficult cancer journey.

May 2017 be a year full of joy, laughter and health!