This coming Wednesday my mother has an appointment...
...with the local hematologist who has agreed to consult with her Mesa PCP regarding her current anemia problems. She's not nervous at all, of course. I'm very nervous.
    Her hemoglobin continues to boing around in the 8's. Last Thursday it was 8.5. All other significators remain in line with her hemoglobin and within her personal "range". While not good, this is decidedly better than the 8.0 reading on March 13th.
    Today I will be compiling what I hope will be a brief history of her anemia odyssey and faxing it to the hematologist tomorrow. He's received the records from her PCP's office. My assumption is that these records include those from the clinic through which her PCP practiced prior to setting up his own concern, although I have my doubts about this since her PCP's departure was never specifically acknowledged by his prior clinic. I had to hunt for the man after he left, which wasn't easy since his listings were all "new" and were a long time in being incorporated into traditional listing sites. 411 hung onto his old clinic listing long past my success in finding him on my own.
    Chiefly, I want to let the local hematologist know that I have copies of all blood tests and most imaging tests done on my mother throughout the period in which her anemia was officially recognized and scouted, in case he hasn't received this information, since most of it was compiled while her PCP was with his first clinic. I also want to provide him with the names and contact information of all doctors and institutions that consulted on her case and hold records on her, let him know how the current phase of treatment was devised and, as well, make him aware of my own concerns in regard to investigation and treatment.
    As well as being anxious about my mother's condition, I am also anxious about how this treatise I'm planning will be received. Although I've spoken with him, I have no idea how he feels about patients and medical advocates who are intimately involved in their own or another's care. In my head I'm designing the document to be as factual as possible and trying to leave out my own feelings about the frustrating experiences we've had involving the confusion about the cause of her anemia and her suitability for aggressive searches for causes.
    And, of course, I'm keeping my fingers crossed. I also crossed a line of belief, two days ago, in regard to my mother's participation in her own care. She is, of course, oblivious about the state of her health and, despite her intense lethargy, is personally convinced that she feels "fine". She is also a woman of God, specifically a modified Christian version of God, and of prayer. She continues to pray every night (not on her knees, mind you, but, nonetheless, she prays). I decided, for better or worse, to enlist her efforts in managing her anemia by exhorting her to pray. It isn't uncommon for me to ask her to pray for herself, which, by her generous nature, she is generally loathe to do. I think she believes that she's "covered", although I'm not sure how she thinks this mechanism works. At any rate, night before last after I'd spent the day focused on her bouts of paleness interspersed with bouts of bright red lips an hour or so after downing yet another 150 mg dose of iron polysaccharide, I said to her, "Mom, you need to pray for yourself tonight. You need to pray specifically about your anemia. You need to pray for its alleviation. You need to pray that, whether or not a cause is found, whether or not you are even poised for a search for a cause, somehow or another a way is discovered that will boost your hemoglobin."
    Yes, I'm aware that she's not handy with words like "hemoglobin", but I used them, anyway. I started in on her while we were preparing her for bed and continued right up to the time I kissed her goodnight. I am sure she understood the seriousness of the plea. "Don't just pull a little 'thy will be done' stunt, Mom," I added. "Keep in mind, 'ask and ye shall receive.' 'The squeaky wheel gets the grease.' Consider this: With close to seven billion souls at your god's disposal, you need to be more than a little self-involved regarding this issue. Push yourself to the front of the line. Be assertive. Think of it this way: You are convinced that you're not done here, that you've got several years to go, and you want those years. I am constantly aware of your spirit and your will and I agree with you. One way or another, I know you're going to be around for awhile. Wouldn't it be nice if you could move through that time with a bit more energy than is now at your disposal? Wouldn't you like that?"
    She nodded.
    "Ask for that, then."
    I went through the same exhortation last night, as well. This time, Mom said to me, "You should pray too."
    If you've read a fair amount of this journal over the last few years you have a good idea of my positions on such subjects as gods and prayer. It's fair to say that I am agnostic about both, although I tend to I carry on a constant internal conversation with all the possibilities inherent in the Mystery of Life, which is my definition of "god"; the constant internal conversation being my definition of "prayer." My usual response to her plea would be a windy sermon on my verions of "god" and "prayer", with which she is so familiar she no longer pays attention. I didn't respond like this last night. I just said, "Yes. I will."
    And, of course, I've been doing this.
    I can't say that her first efforts worked, but I can't say they didn't. I noticed, for instance, that her nap, out of which it's been hell, in the last several weeks, to awaken her even after three hours, ended of her own accord yesterday after an hour and a half with her having emerged from her bedroom unbeknownst to me to shuffle over to the banister surrounding the living room and hail me. She'd taken off her oxygen cannula but wasn't breathing like a race horse in the last lap. We've been doing a "Jesus movie" weekend in honor of Easter, of which she's been unusually aware this year. Yesterday she was primed for both of the extremely long movies we watched, then devoured some of the special bible history programs I found on one of the cable channels. Both the movies and the programs were littered with bits of to-the-point conversation. As well, immediately upon awakening, while we were still in the bathroom getting her ready for the evening, she launched us into a discussion of the phrase "living room" and what it might have signified throughout ages and cultures. When she retired last night, although her retirement was "early" at 2330, I noticed that her bedroom light remained on until sometime between 0030 and 0100 this morning. I know she was reading because right after I kissed her goodnight she picked up one of the books from her night stand and began leafing through it for a "good part". I'm not sure whether she remembered my exhortation to pray again for herself. I considered, at 0030, going in to remind her but decided, Nah, one way or another she'll remember.
    So, "off we go [again], into the wild, blue yonder," a song my mother has lately added to her repertoire of frequent song bursts. Who knows where we'll land. I'm hoping (yes, Mom, that's "praying") that it's someplace with a somewhat higher hemoblobin count than is presently the case. And, in the meantime, she always looks ruddier against a blue background.
    Later.
- posted by Gail Rae @ 11:19   email  this post