CR 755: I've been deported

After 5½ years of being a part of my life, this afternoon my PowerPort was removed from my chest. It had been used my GemCis chemotherapy in 2012, my radical cystectomy surgery, my DD MVAC chemo is 2013, all 46 of my immunotherapy infusions in 2015-16, and dozens of CT scans. It has saved my veins from damage, has eliminated my arm bruising, done what it was intended to do, and served me well.

My PowerPort minutes after it was pulled like an alien from my living tissue

So why remove it? Three reasons. First, it’s not being used, and is unlikely to be needed in the foreseeable future. All of my recent CT scans at Kaiser have used my arms for the IV contrast. And if I need further immunotherapy, my arms are fine. Second, keeping the port in without ongoing use increases my risk of blood clots. Third, and most importantly, when I read books with my grandchildren on my lap, they have a tendency to bonk the back of their head into my port, which doesn’t feel good. And since Jennifer and I are going out to Utah next month to babysit the grandkids while Chelsea and Josh take a much-needed vacation, I wanted to be ready.

The procedure took 5 minutes. A local anesthetic, a little slice and tug, and it was out. A few stitches and I’m now I have no duties (get it? free port . . .) Good thing I have my passport.

In other news, Jennifer and I will be attending the BCAN ThinkTank in Charlotte NC from August 3-5. Stay tuned for the latest developments in all things BC related. But before that, Jennifer and I will be going up to New England to visit Spencer one last time on his thru-hike of the Appalachian Trail. He’s currently in Vermont, and hopes to be in the White Mountains by the end of next week. If you haven’t given a few bucks to the fundraising purpose behind the hike -- to support the Chris Atwood Foundation -- please consider doing so.Thanks!

CR 743: Another clear CT scan

Twelve weeks have passed since my last scan, so this week I had another scan at Kaiser. Today I drove up to Hopkins to check in with Dr. Hahn. On the way up, the kaiser nurse called to say that there were no changes from the last scan. Dr. Hahn confirmed that there wes no evidence of metastatic activity. Yay!

I questioned Dr. Hahn about the latest durability data for checkpoint inhibitors from the June ASCO meeting. He said that data was still being collected (and would be for years), but to date the interim data suggested that, of the patients who have had a response to PD-L1 drugs, so far only about 15% had relapsed. He stressed how a lot of these patients were still on trial and getting their drugs, and that there was a much smaller population of patients who were most similar to me, who had completed (or substantially completed) their trial, were off drug, and had a durable complete response. Nevertheless, the preliminary data suggests that so far there has not been a large number of patients who have had immunotherapy-induced remissions, then had their cancer come back.

I also asked whether I should have my PowerPort removed. It's been sitting in the top of my chest for more than 5 years. I noticed during my recent trip to Utah that when my grandchildren sat in my lap while I read to them, they would sometimes bonk their head against it, sending a jolt of pain. Dr. Hahn said that he saw no reason to keep it in, as there was no immediate need to use it. Keeping it in also had a slightly increased risk of blot clots. So maybe I'll have to call ICE and get deported. (Gotta love cancer humor.)

While in Utah last month, I had dinner with a friend of a friend who recently had been diagnosed with muscle invasive bladder cancer. As I shared bits of my cancer journey and some of the lessons that I had learned, I was reminded of how much of a long haul it's been. Bladder cancer usually is a chronic disease, one that has a high frequency of relapse and can require a lifetime of monitoring. I was struck how all of the issues I've been dealing with have been the side effects from the treatments to try to stop the cancer. My discussion was focused on the consequences of trying to treat my cancer. I've felt virtually nothing from the cancer itself. I understand that the disease is worse than the cure, and that with no therapy I'd almost certainly be dead, but my life has been irrevocably altered by the therapies I've received. I long for the day when medical knowledge advances to the point where doctors can cure mets bladder cancer (or any of the 100+ other types of cancer) with a therapy that has minimal or no side effects.

Some notes on my kids: Last week, my oldest, Chelsea, graduated from her medical residency program, and will be working as a hospitalist in Ogden Utah. Last month she and her husband  bought an old farm house with a barn and out buildings on 5 acres in Huntsville. They already have a dozen rabbits, 3 pigs and a cow, and more animals are on their way. Spencer is still on the Appalachian Trail, is about to enter Vermont, and is hoping to finish at Mt. Katahdin by mid-August. Kirsten just moved to Denver and will next week start a 10 month program to get her MSW. And today is Garrett's hump day - he is halfway through his mission for the LDS Church. I'm so grateful that I can have joy and rejoicing in my posterity.