Interregnum - Watchful Waiting

 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

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Kevin's Update

Sorry for the long gap in posting. Many reasons, which actually have a lot to do with the current state of our health care system, and (despite my VERY open public posture on my disease) a lingering concern about discrimination against cancer victims.

First, the medical summary. I finished Cycle 6 December 26-28th. Another normal, regular treatment, nothing special. Was truly glad to have it behind me. I was a bit concernecd about the size of the nodes in my groin, still bigger than they used to be before this flareup. Doc thought they might just be scar tissue, since that's where things presented this go round. Had a CT scan in January, the results concerned the radiologist. Turns out they have an index for the size/reduction after chemo, and several of mine fell above that. Had a PET scan next. PET shows metabolic activity, and since cancer is very high in this, active cancer shows up as a "hot spot" on a scan. Well, a couple of my nodes still had some activity. This was not a great day for me, it must be said.

Thanks to Dr. Levine, who is amazing at discussing this type of thing with me, he understands my preference for direct, medical discussions while being obviously concerned and even upset by the news. Dr. Shah over at Moffitt was on it, responding to my emails, late at night, within the hour. He wasn't nearly as concerned as I was.

Why? Well, he has LOTS of ongoing, very positive treatment options. He considered my current state controlled enough to press on with Plan A, Rituxan maintenance even though I'm not completely in remission. He wants to wait on the more aggressive, progressive things until my disease is "bulky" again, if ever.

He worked with his nurse to get me an early appointment over at Moffitt. His meeting with me and Sandy was very positive. (Right out of the chute, when he walked into the room, he apologized because he realized he'd left an email unanswered, a few weeks before. Got to love this guy.) Just since we'd chatted by email a couple of weeks before, he's had such great response from a new, cutting edge Phase 1 trial, he's stopped any other treatment for all his current patients and moved folks onto that one! 

WARNING: MEDICAL TECHNICAL INFORMATION FOLLOWS!!!!

The latest wonder artificial monoclonal antibody, Brentuximab, or SGN19A, is similar to Rituxan, but instead of targeting the CD20 genetic marker, it goes for CD19. Combined with Velcade, a chemo drug, it's being moved rapidly along in the normally conservative Phase 1 clinical trial process. This isn't the same trial Dr. Shah is doing, but similar, with a lot of links at the bottom:

 

http://inclinicaltrials.com/burkitt-lymphoma/01786135.aspx

 

I've had one of the 60 day cycles of Rituxan, on February 28.  The plan is to do two more, in April and June, then have more scans. At that point, there are two branches in the decision tree. One, there is less activity, or none at all. In that case, continue maintenance Rituxan for as long as it helps. Two, things are worse not better. In that case, we move to something like the trial above.

 

Now, the emotional side of things. I was not happy, to put it mildly, to still have active cancer. The normal grieving cycle happened, and I had the usual lots of support from my family, friends, and co-workers. Sad to say, I'm getting used to this. After about a month, I did have a minor epiphany.  (Epiphan-ette? Epipha-lite?) I have officially moved from ever being cured, to being in a chronic condition. Once I approach it from that perspective, it's really no different from having diabetes, or many of the cancers my friends are living with. I've been doing this for 7 and a half years now, so going for another 7 and a half, or 15, or 30, is just something to do. Science is moving very fast, thanks to huge learnings from the Human Genome Project, which I've always said will prove to be as big a revolution as the Wright Brothers, television, or the internet.

What made things to difficult to handle was my job situation. As I came out of my treatment cycle, I knew our contract would end in March, or maybe as late as June. I'd figured on being "done" with cancer, and could focus on helping my team find jobs, extend things as long as possible, and find something for myself as well without being in treatment.

Instead, I still had the damned thing. On the advice of my family, and several good friends, I decided to suspend posting on this blog, not mentioning the whole "not in remission" thing. I didn't feel good about it, and truly if I was a single man, I'd have been loud and proud about it. But, having a family who needs my income, and more especially, the benefits, I suppressed my normal public profile and ran under the radar for a while.

 

I was truly and wonderfully blessed in February to be interviewed for one of the few jobs in the post-United Space Alliance contract that Jacobs won. (500 jobs, 7,000 people applied, 21,000 total applications!)  I was OK with interviewing with cancer because the men who were considering me are both close friends, and knew about all this. However, it worked out that I interviewed for a different job, with someone who had no idea. I struggled with what to say, went through the interviews, and waited for a long long week, not knowing what I would do if I got an offer. If their benefits would not accept pre-existing conditions, I had no idea what to do. I was in active treatment. Medical benefits are in the purgatory of full implementation of the Affordable Care Act. Most major insurance companies are in voluntary compliance, but not required to be. Worse, Life Insurance, Short and Long Term Disability, and other benefits are NOT covered by the ACA.

I got the job. Which was a huge relief. Before accepting, on a Saturday, I called their HR rep and discussed the issue in a generic fashion. "I have a family member with a chronic, expensive, medical condition." She assured me this was no problem. On Monday am, when I signed the offer, I asked again. No problem. That evening, I started my new job, for free, while doing my old job during the days. We had about 3 weeks before contract start, and all of us in management worked nights and weekends to get things set up. Somewhere in there, I had a chat with my deputy director, a local man who knew me casually. He remembered my award back in 2006 for coaching an OM team while in treatment, and thought the whole thing was none of anyone's business except mine. What a relief!

Still, until I signed the benefits packages, and worked very openly with the new HR reps, I was under considerable stress. Not to mention working 80 hours a week, just off treatments, while worrying about active scans and treatment paths and visits to Moffitt. And trying to hire as many of my current team as possible, while watching the USA contract unwind. Came March 1st, I was quite relieved to go to my new job, with benefits, with 5-10 years job security.

Last week, I went in to the cancer center for a port flush. I handed them my new insurance card, waited, and got a call from their insurance rep. My insurance has a pre-existing condition clause, I'm told.

Thud.

I was so upset I just walked out and sat in my car. Luckily, I had my benefits info in my briefcase, so I called up to Huntsville and talked to the benefits rep. He was livid. He actually cursed. I have, he said, a policy with full coverage and no pre-existing condition clause. Don't worry, he will take care of it. Damn the insurance company anyway, he said.

So now we wait for things to settle out. Hoping it comes out all right. Hey, stressful living is what I do!

In the meantime I enjoy my new job, my family, my friends, and we're even catching up on things around the house.

Happy Easter to my Christian friends. And Happy Easter to my non-Christian ones, too!

KB