In it

On Wednesday, I almost dragged you all into the anxiety that is my day to day existence.  Just to heighten the drama, and show you what it's like, rather than do what I usually do:  wait until it's all resolved and then describe it to you with a hilarious punchline.  But in the end, I didn't want to fully drag you in.  I will, however, drag you in partially. 

Wednesday, I started seeing the spot in my right eye that I began seeing right before my diagnosis a year ago.  I'm pretty positive it is the same retinal condition (retinopathy) that was triggered by leukemia when it infiltrated my cerebral spinal fluid the first time around.  I don't know how long it's been there.  This time, the spot isn't in the center of my vision, so I possibly didn't pick up on it right away.  At the moment, it's not even affecting my vision (although they usually get bigger so we'll see what happens), but I do see a flash of it every time I blink.  I suspected--no--I was positive, I was having a central nervous system (CNS) relapse.  Which would also explain the consistent headaches I've had for the past, oh, I don't know.  3 months?  Maybe it would explain the afternoon of vomiting on my cancerversary?  Part of my high-risk diagnosis has always been my CNS involvement.  It can be difficult to eradicate Leukemic cells from the CSF (cerebral spinal fluid, you may or may not recall) because they can "hide out" amongst the tissues.  Moreover, you can be wrong in thinking they're gone, because they are not necessarily evenly distributed throughout the fluid, so one can draw a sample that just happens to miss the leukemia cells.  If you relapse in the CNS, it usually eventually happens in the marrow too.  And that means starting everything all over again, with probably a lot worse results.

So when I saw the spot, I tried to remain as calm as possible.  Which ended up having to be an Ativan-assisted calm, but it was the best I could do.  I told Brett, and I swear his impenetrable demeanor cracked for just a second.  But he quickly resumed his do-something role.  We calmly emailed Dr. R. and suggested I might come in for a test of my CSF as soon as possible.  She set me up for an appointment for 3:00 on Thursday.  In the meanwhile, I researched everything I could about relapse after transplant, 2nd transplants, cranial radiation, etc.  For the record, everything is possible, with a low probability of long-term success.  I read about clinical trials for target-specific treatments in case transplant wasn't possible.  I wondered if I even was willing to go through treatment again; calmly considered the possibility of things not working out for me, wished I had more plans made or at least written down somewhere for that eventuality.  And if I declined more treatment, how much time would I have and what would I do with it?  What would I be able to do?  Yes, it was grisly.  Yes, I almost blogged.  Yes, it would have depressed you.

At the appointment on Thursday, my Dr. assured me that a CNS relapse is rare as she casually drew fluid out of my brain.  She said she could give me preliminary results the following day (today), and final results Monday or Tuesday.  Although I couldn't eat, and couldn't sleep, I managed to remain calm the rest of the evening.  Consciously enjoyed my time with my family.  Then distracted myself from planning for my demise by watching Ghosthunters and a movie.  I somehow slept.

My anxiety built all day today while I waited for the call.  Brett had a dr. appointment, and Luna and I went along to keep my mind a little bit occupied, but I checked my phone and email about every 5 minutes.  I called the Cancer Center and left messages.  I emailed my nurse and both of my doctors.  Finally, I received word.  They didn't see anything abnormal in the CSF sample, nothing like when I was first diagnosed.  It seemed like it might test negative after all, so far things are "looking pretty good."  Normal counts and everything.  But they won't know for absolute sure until a more fine-scale examination of cytology Monday or Tuesday.  That's enough to get me through the weekend, I suppose.  There is definitely an element of relief, but I'm not going to get crazy with it until I hear what the cytology says.

So I guess I have possibly dragged you in partially as I wait through the weekend for the final results.  I kind of apologize for that, because part of me doesn't want anyone to know what this feels like.  Or to even try to imagine it.  I just can't wish that on anybody.  But I also have this insatiable need to show you how quickly the trajectory of your mind, and life, can change in a very small moment. 

I'm not exactly out of the woods yet, but I plan to enjoy the weekend, and will update as soon as I have more info.  And anyway, if I'm not relapsing, wtf is going on with my eye this time?!  So there's that.  I still have remained--for the most part-- eerily calm, despite a few tears here and there.  I can be here and enjoy this moment while knowing that tomorrow may be the worst day of my life.  I've had plenty of practice with that.  I know that everything is transient.  The universe keeps reminding me.  Over and over.  I GET it.  The universe is a nag sometimes.

More next week!  love, j