Breathless but Better (+ Scheduling Tears)

Thursday - August 23, 2012

I feel that I have turned a corner;  my mouth sores seem to have hardened and allowed more eating and range of movement - hurrah!  It is difficult to eat and talk when you simply cannot open your mouth!  My energy also feels more available, more on-tap.  In fact, after a deep afternoon nap yesterday, I was restored enough that Joe and I were able to enjoy a long sunset walk to the river with the hounds - how long has it been since I managed that simple once-daily feat?!   I am still feeling the effects of an elevated pulse.  Some breathlessness and fatigue.  I am very aware of taking it slow and easy - especially on the stairs!

Today is officially the first day of school for teachers at Matoaka.  Another milestone signalling my current focus:  not on work but firmly on my health.  Nonetheless, I do feel some pangs!  I am going to try to channel some of the vicarious energy from all of those dedicated teachers and staff into some home tasks.  Specifically, more phone calls today to try to hammer out medical appointments.  Yesterday, one of my nurses at Dalton Clinic called worriedly asking why I had missed my appointment.  Huh?  I have never had a Wednesday blood draw on top of my normal Monday / Friday journey up to VCU and had no clue that an appointment was scheduled.  Three trips to Richmond in a week?  I can't see that happening unless there's an emergency.  After she said I was also scheduled for three appointments next week, I pushed back and said I was happy to come Tues / Fri or Mon / Thurs but I was not coming up three times without a specific medical cause / reason - not just for blood draws.  Okay ... resolved that issue....  THEN she mentioned that next Friday's appointment is an 8 a.m. consult with my oncologist and an 11:30 Rituxan infusion that takes 2.5 hours.  Ummmm .... say what?  3.5 hours between appointments?  Yes, life is pretty much on hold due to this lymphoma but my husband (and able chauffeur) would like to devote some time to his actual job.  That's the subject of today's phone calls to Dalton.

As for my medical records, Carolyn made some calls and found the VCU person in charge of last week's request.  The records were mailed (not FAXED as specified by UMD) up to UMD-Baltimore last Friday and have not yet been tracked down on the receiving end.  Another task.  At least I am finally feeling alert and above water enough to find them and schedule this appointment!

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Remarkably, I have shed very few tears these many days since all hell broke loose on December 28th.  Of course, in my pre-diagnosis and chemo days, I had moments where I cried with the intense pain of the migraines.  Since diagnosis and chemo, I have cried in saying goodbye to the children and to my sisters, in leaving my students and classroom for the last time, and once in a moment of abject fear amidst researching the BMT options (these mortality rates are scary).  Today, I cried when confronted with a scheduling clerk up at UMD-Baltimore!  I already had an inkling of a possible issue when warned by my primary admin contact that he would be on vacation for a certain period and that his counterpart would not be helpful if I called.  In previous phone conversations, she has demonstrated poor phone skills and apathy and today, in trying to track down these elusive medical records, she actually said to me, "Well don't think that I'm going to do anything to help you" before abruptly putting me on hold.  I couldn't believe it!  And even more surprisingly, I just BURST into tears to the extent that the dogs both roused themselves and began showering me with kisses.  When she came back on the phone rather than my desired (and primary) contact, I clearly communicated that she had been rude, unhelpful, and not a good representative for her employer.  As she apologized, I couldn't help but pull the cancer card:  I have stage 4 lymphoma, am trying to get info on a Bone Marrow Transplant, and would appreciate not being told when people are completely unwilling to help me.

Then I dried my tears, took a deep breath, and called another contact number for this physician.  Happy energy on the phone from Angela (aptly named) who is currently digging through the mail pile as I post, trying to get her hands on my records.  When I explained that they may be at her address rather than the scheduler's address, she immediately said no problem, she would get them to the other office.  Yes.  Then I can make this damn appointment!  More Angelas in the world; fewer she-who-will-not-be-named (until after my second opinion when I will leave feedback directly for the doctor).