Weird Science

This week I received even further confirmation that my body is a weirder-land.  Throwing curveballs at my jaw surgeon AND my oncologist, we are all left shaking our heads at what it has taken and will take to keep this body in a usable state.

There's a lot to cover here - and I'll try to be as clear and concise as possible.  First things first - there is a hole in my face!  More specifically, the jaw repair surgery that I had in July has not completely solved the problem (something I knew was a risk) of the exposed hardware.  There is more internal deterioration, leading to an open lesion under my chin that needs to be addressed.  How we do that remains to be determined and starts with a CT scan of my jaw this Monday.

On to my onc visit yesterday.  A couple of weeks I ago I had a bone biopsy done because my last set of scans showed some disease progression and the concern was that the pathology had changed over the years.  And if that turned out to be the case, it might change our approach to treatment.  As it turns out - it did change.  But not in an expected way, with some markers changing and others staying the same and one marker resulting in my onc saying he had NEVER seen a result like the one for this particular marker (and calling it just weird.).  Curveball! Combined with the odd results of the December scans, it made for some interesting discussion for the rest of the visit.

So what does all this mean?  Well, several things.  First of all, the biopsy sample will be sent out for more detailed testing.  The unusual biopsy and mixed scan results indicate that my current medication works on some of the tumors but not all of them so we've got to zero in on something that will attack the disease on a more systemic level.  In all likelihood, it will mean going back to "traditional" chemotherapies vs. targeted chemotherapies (which is what I've been on for the past 7 years) - we're talking a port insertion, weekly (or bi-weekly) infusions that take several hours, hair loss, bouts of nausea, fatigue, "chemo head" etc.  I've done this before, I know I can tough it out and still enjoy a reasonable quality of life but gotta say - not looking forward to it.  On the upside - my onc is in no rush to get there, emphasizing again that this is not an emergency situation with respect to changing medications.  In fact, I'm actually "too healthy" for a clinical trial that my onc was hoping to get me into.  Go figure.

Second of all, there is one tumor that needs some attention, a spinal one (L1).  It's not large and it isn't causing me pain but the scans show some cortical destruction so it may need to be radiated to prevent any potential spinal instability.  My onc will consult with a spinal specialist and let me know but it would be the same stereotactic radiosurgery that I had on the shoulder, hip, spine and rib tumors over the last year.

Third of all - circle back to the jaw issue.  If surgery is required (and unfortunately, depending on what the CT scan says this could mean another complete jaw reconstruction, the prospect of which absolutely terrifies me) it would have to be done before any infusion chemotherapy is started because my immune system would not be able to handle it once on the chemo.  So - weird situation with respect to timing here.

Despite all of this uncertainty, I'm not nearly as anxious or worried or dispirited as I would have expected.  Perhaps it's because overall I feel pretty good physically; perhaps it's because I have a lot to look forward to in the next couple of months (taking all my girls to see Aladdin; trips to Phoenix, Norway and Croatia/Italy; my 59th birthday); perhaps because I realize that, at least for now, I still have it better off than many; perhaps because I've learned not to worry before there is something to worry about.

Stay tuned - you'll find this story has many more chapters in it.

Blessings and Love to All.