Friday, November 7, 2014

Room 207

November is here, and I'm finally coming out of my cocoon, where I unplugged from All Things Cancer for a while.  I finished having 15 radiation treatments at Johns Hopkins on October 28th and raced home to reunite with Sadie.  I missed her terribly, and since returning home I can't keep my hands off her.  She was very happy to see me until she realized I had been gone for a long time.  Then I got the look:  She practically had her paw on her hip, tilted her head and meowed, "Where the f*** have you been?"  

All went well with the radiation treatments.  Since the cryoablation was in the same area 3 weeks earlier, it's hard to tell what soreness was caused by what.  I began to have a hard time swallowing, which was caused by inflammation from radiation near my esophagus.  But that eventually went away.  After I got home, I developed a burning rash at the site of the radiation near my collar bone, which is still annoying me.  Graft vs. Host Disease (GVHD) is starting to kick in, which happens whenever my new immune system takes a hit. And, as predicted, instead of sleeping my usual 10 hours a night, I'm now sleeping about 12.  But I also see signs that the Cone of Cancer I described in my last post has taken a beating.  For a year or more I've had extremely sharp pain in my chest whenever I sneezed or coughed.  I'm very happy to report that this no longer happens.  My left side is still a mess.  I have chronic pain in my left ribs and nerve pain in my left arm from the last lung surgery in August 2012.  It will be awhile until I can wear the shoulder strap of my seat belt across my chest, but I think I might continue to notice less pain in some places.  It's been a long time since I've been able to say that!

I was able to keep myself busy while in Baltimore.  I used my appointments with Dr. Hales to ask about current trends in radiation research, I spoke with several Adenoid Cystic Carcinoma patients who were trying to navigate the choppy waters of treatment options, and I even found the chutzpah to suggest a future research project in which Dr. Hong and Dr. Hales could team up for the benefit of ACC patients around the world.  I met up with Diane and her husband, Rick, when Diane had her first RFA with Dr. Hong.  A few days later, I met up with Len and his sister and brother-in-law as Len also had his first RFA with Dr. Hong.  Since my radiation treatments were managed by Dr. Hales, Dr. Hong was confused as to why I kept showing up in his recovery rooms.  I also got together with Michele, a very brave ACC warrior, and her husband Tom, a very brave Acute Myeloid Leukemia survivor.

Adding to this community of survivorship, I stayed at Hope Lodge, one of the American Cancer Society's free housing sites for patients and their caregivers.  I mentioned in my last post that I happened to be assigned to Room 207, the exact same room I had when I underwent another 15 day radiation plan to the other lung almost two years ago in early 2013.  There is instant acceptance at Hope Lodge because, despite the fear, everyone is hopeful and supportive of everyone's battle against a common enemy.  

Most of us feel like crap, yet everyone finds a way to laugh, tell jokes, share stories and welcome the distractions of a lively game of bingo or a community dinner.  One night I taught an elderly couple how to play Candy Crush, and after the woman retired for the night, I later saw her husband glued to the computer in the library, sitting in the dark, determined to make it past level 5.  Several times a week local medical schools, churches, community groups and past residents of Hope Lodge prepare dinner for everyone, giving us a chance to talk about whatever might be going on while getting a break from meal preparation.  Since most of you know that oatmeal in the morning is the extent of any meal preparation that I engage in, this was a huge benefit that I greatly appreciated.

It's hard not to make new friends at Hope Lodge.  I got together with Jake and Lisa, two friends from when I stayed there the first time, and I hope to stay in touch with my new buddies, including Vern, Patrick and Donna, and others.   The managers, staff and volunteers are truly dedicated to providing support and comfort in any way they can, during very difficult times for many people.  It reminds me of one of my favorite Bruce songs:
Well I will provide for you
And I'll stand by your side
You'll need a good companion now
For this part of your ride
Leave behind your sorrows
Let this day be the last
Tomorrow there'll be sunshine
And all this darkness past
(Bruce Springsteen, Land of Hope and Dreams)
As long as I can keep my feet firmly on the ground (I bought cleats to put over my shoes this winter!), I have reason to celebrate the end of a very difficult year.  November 17th is the 4th anniversary of my stem cell transplant -- my second birthday.  I still can't believe I got through that.  And I'm confident that the Cone of Cancer is dead, leaving me able to recover some energy and work on downsizing all things material (and unimportant in the grand scheme of things) in preparation for my move to warm and sunny Pittsburgh.  Thankfully, I have no plans to return to Baltimore before early February, when I'll have another set of scans.  

This holiday season I wish that all those in pain and feeling alone can find their Room 207 -- a place for hope, love and community -- for this part of the ride, and always.  




  1. My husband was diagnosed with ACC 9/12/14 & had surgery on 9/30/14. He had a tumor removed from his Parotid gland @ Hopkins. The night before surgery we received the results from his Pet scan which indicated he also has tumors in his liver. We received the results from the liver biopsy 2 weeks ago and he was told its also ACC and there is no cure. He started radiation on his face last week and is waiting to get an appointment with Dr. Hong who I noticed is also your doctor. We have really received very little info from Hopkins and not a lot of hope. Any info or tips you can pass on would really be appreciated. Thanks, Nicki

    1. Hi Nicki: I'm so sorry to hear that your husband has ACC, but so glad that you reached out. Please visit ACC Organization International at and ACC Research Foundation at for the best information about ACC. I work closely with the Board of ACCOI, a patient organization and we would love to help you and your husband navigate this really hard time. You are at the right place at Hopkins and Dr. Hong is probably the best Interventional Radiologist for ACC in the country. I have sent several ACC patients to him. Please email me at and give me your contact information. I would be happy to talk with you. This disease is scary as hell but it is manageable. You're doing everything right!


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