Surprise! Oh, these Garden Paths ...

Saturday - September 8, 2012

After again exercising firm (better) control of my sleep, I awoke to a bit of a surprise from my intern.  They have scheduled another follow-up head / orbit MRI following the end of today's chemo.  He had originally suggested contacting radiology for a 3 p.m. appointment but I pushed back saying that chemo was to be done at 11:30 a.m. and that a noon appointment would eliminate more than three hours of downtime.  He has said he will ask for 12:30.  Arrgghh.  Deep breath.  This schedule is preferable to interrupting Joe's work day schedule so I will just postpone my deep desire to get OUT of here and hope that given general delays and scheduling issues, I will be home by mid-afternoon?  dinner?  Fingers crossed!

But isn't this another surprise  that could have been better addressed through clearer advance communication?  These garden paths diverging from the discussed, planned, and mapped procedures have eroded my patience as well as my positivity.  Planning and focused goals are simply a part of my make-up;  I like firm plans and schedules to anticipate and get my mind wrapped around.   This strong mind-set applies to overall life goals, travel, and certainly lymphoma treatments!  Improvisation of firm outlines and plans is not one of my strongest assets and I find that these deviations drag me down ....  Unfortunately (for me) they seem to be par for the course these days.

Today marks the most glaring turn onto a first-unknown garden path.  Way back on Friday May 11 when Dr. Perkins phoned me late in the afternoon with my diffuse large b-cell lymphoma diagnosis, this chemo round #6 was to be the end of my treatment.  I would have tripped out of the hospital this afternoon knowing that a Neulasta shot awaited me on Monday, Friday would bring a 5-minute vincristine infusion, and four days of mega-steroids would span next Saturday – Tuesday.  And then this would have been it.  6 rounds and done.  But – perhaps I’m a cynic at this point - was I really told everything?

In early June, I had my realization that this timetable (this “syllabus” as Carolyn terms it) was not accurate.  During chemotherapy round #2, we had our first peek at the Bone Marrow Transplant (BMT) garden path - my first hint that the 6 round Hyper CVAD treatment protocol was not exactly what my oncology team had in mind.  Bumped from the Oncology Floor due to lack of space, I was placed on the BMT unit where the attending physicians spoke to me about my upcoming BMT.  Ummmm …. Say what?!  Carolyn quickly hustled down to Dalton, pulled my oncologist for 2 minutes of his time, and got acknowledgement that a BMT was a definite possibility.  In my subsequent research, looking at my IPI I saw clearly that I am at a High Intermediate risk group and that with such a designation a BMT is indeed recommended.  Surely, my team realized this path was probable if not inevitable.  So why wasn’t I made aware of this treatment at that initial discussion back on May 11?  In early May, Joe and I were still thinking that in December we would move to San Francisco or that we would stay in Williamsburg where I would return to the classroom as a substitute or as a mid-year replacement classroom teacher.  Lord! -  in early July we were still discussing our planned Christmas vacation to Maui!  We STILL had not realized that the BMT garden path led us away from all travel, all moves, all work, and all community interaction.  We had not realized that our world and choices would be contained for another full year.

As I have discussed in numerous earlier posts, garden path #2 involves third-party bone marrow transplant rather than the autologous (self-donating) BMT.  Again, I felt that I had received easier / safer information and then when the firm discussion actually happened, a firmer / scarier reality surfaced.  My probable central nervous system (CNS) involvement and my “bizarre” symptom presentation were already well known.  Why was autologous option mentioned on the BMT unit but then played down at our formal meeting?

Incidence of DLBCL in NHL

And now, I am presented with garden path #3:  more hospitalizations to span this supposedly end-of-treatment round #6 and the upcoming, still-unscheduled, still-undefined BMT.  During these hospitalizations, I will receive methotrexate without the companion cytarabine infusion thus allowing a much higher level of methotrexate infusion to address possible CNS involvement.  How many days will this involve?  The usual 4 days at a clip or will a higher methotrexate dose require more time to purge?  No info ... yet.

Finally, in last week’s blog, Suleika Jaouad wrote that she is now on a chemo regimen following her BMT.  Carolyn and I both had the same reaction.  Is this my garden path #4?  Does anyone know?  Is there a known “syllabus” out there to which I am not privy?  Is there a blueprint available that will be thoughtfully edited as I progress and move forward?  Probably, all cynicism and paranoia aside, it is as Joe asserts and the latter is the case.  My team is making modifications and being conservative and cautious as each treatment stage ends and a new phase opens up.  My intellectual self aligns with Joseph but another part of me harkens back to the information control of previous medical eras when plans were meted out in small doses and at the discretion of the physicians. 

I sometimes feel as if I am indeed wandering down one of many garden paths, not knowing where I am going, not sure I have full information.  Completely aware that I exercise very little to no control in this journey.

And what do I intend to do?  Well, of course I will continue to pull out info from my team and educate myself in all ways possible.  However, my primary goal is to take advantage of the expertise that surrounds me.  Who the hell am I to presume to know what is the best path?  I will walk down all garden paths shown to me on this journey in order to do whatever is necessary to purge this lymphoma completely and permanently from my body.  I just wish I had a map of the garden and all the paths I will be expected to follow.  

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SO happy to have Yvette as my RN today!