It's late, I know...
...and I've only managed to input one of the nine remaining blood test results, those for 12/20/02. I figured out a lot of things from posting this one, though, which are 'precipitating' the 'event' of me making some global changes to test results already posted and to be posted.
    First, I finally got it regarding the Reference Range for Blood Glucose. Regardless of whether a patient is fasting, the range for a CBC from this lab (or, perhaps, from the manufacturer of the test) always reflects the fasting range. There is an area on the results that tells (accurately, I hope, although I will be checking this, too) whether or not the patient is fasting. I just never noticed it. I figured this out from looking up some information on Blood Glucose in order to answer a question I had about whether it was normal for one's Blood Glucose to vary out of fasting reference range during the day as one eats and digests foods, and, if so, what those ranges are for diabetics and non-diabetics. I haven't found all the information, but found enough to realize that, at least for diabetics, yes, blood glucose varies and there are appropriate ranges for the variations as well. As I gather more information on this I'll post it. Since my understanding of this is increasing I will be adding all Mom's blood glucose readings to her already posted and to be posted test results and time of day of the draw if that information seems pertinent.
    I also noticed that the Hemoglobin A1c test is ordered separately so I've given it its own table and will be changing this in all the other tests. Depending on what other tests have been ordered, it tends to show up all over the map and I have been inserting it in whatever table it happens to follow, which can be confusing. As well, to each of these tests that has the American Diabetic Association Guidelines for these results posted I'll add those as well. So far, these appear on only two test postings.
    I have to mention, I love going over and posting these test results for a couple of reasons. I like learning the language, it is so provocative. I love what it adds to my overall language acuity and my penchant for playing with language. I also like what I'm learning in regards to body and health indices, etc., and how these things cause my mind to take flight. Frequently when I am doing this (as is often the case when I am doing other life things, as well) I feel enveloped in a very gentle, firm feeling of being surrounded by what I call god/God/All, as this essence smiles encouragingly around me, telling me, "Learn as much as you are able. Think as much as you are able. Create out of it as much as you are able. This is how I am known and how I evolve."
    This morning I've also been considering, as I concentrate on the test results in light of My Mother's Revival, that my standards of assumption for what is and isn't possible in regards to age (especially old age) have needed much revising. I now am thinking that at any age with motivation (and, I suppose, without, as well) startling changes and startling growth are possible. In my mother's case I am the primary motivation but as we continue from here I will be happy for that to be augmented with the motivation I expect her to glean from being out more, moving more, thinking more, seeing more, maybe even hearing more... I am excited about where and how this all might propel her. It's happening slowly and I'm not going to push it but, damn, it's amazing to me that we've even gotten this far. Maybe we shouldn't so easily give up on those who seem entrenched in their aging bodies. Maybe they aren't entrenched by their bodies, maybe their bodies are, in many cases, reflecting the entrenched thinking of those around them (or, for that matter, not around them).
    Lastly, I've been doing much reflecting this morning, as I post test results, about my relationship with my mother's doctors, especially her PCP. I am pleased to consider how dynamic our relationship is, how none of us (in most cases) flinch from disagreement with the other, how we are all strong in our opinions as well as willing to have our opinions challenged and how readily this very active dynamic works to help my mother and to help me better care for her.
    It's a good day today. We're preparing to go out and do a little shopping for minor grocery necessities and a new Scrabble game (our old one's alphabet has been decimated over the years). Who knows that will happen next?!?
- posted by gail rae @ 13:04  0 comments   email...this post

 
All imaging test results that I acquired...
...from Mom's PCP have been posted and uploaded. Added to what I mentioned earlier are two Echocardiograms and a Carotid Sonogram. I also made some corrections to a few previously posted and uploaded tests as follows:

1. The CT of Chest Without Contrast that I earlier reported as having been taken on 9/22/02 was actually taken on 9/27/02.
2. I added commentary to the Chest X-ray taken on 9/17/02, placing it by precipitating event and connecting it to the CT of Chest Without Contrast taken on 9/27/02, as this test precipitated that test.
3. I got a full copy of the blood draw tests taken on 9/17/2002 and was able to fill in two values for Hypochromia and Ovalocytes under the Slide Review/Morphology portion that had been cut off on my earlier copy.
4. I changed the date of the blood draw test previous reported as 5/23/03 to it's correct date of 5/22/03, which had been obscured on a previous copy.

    I still have nine fluid (blood and urine) tests to post. Fluid test results typically take longer to input than the imaging tests and are a strain on the eyesight so I'm going to defer those to next weekend.
    I'm thinking in terms of soliciting all the reports that Banner Hospital has on her that were taken during her brief stay last fall, any reports from her hematologist that I don't have (I think I have most if not all of them, actually), and any formal hard copy reports from the gastro-enterologist who performed her colonoscopy. I'm going to defer that, too, until we return from Prescott in the late fall, as we aren't up there yet and, now that Mom is released, as soon as our refinancing is done I think we could use a doctor/lab test result-free couple of months.
    There are also two medication changes to report. As of yesterday her PCP decided to lower her iron dose from two pills per day to one. As well, he suggested moving the one 2 mg Detrol from morning to night rather than prescribing a 1 mg Detrol tablet twice a day. We started both of those changes today. I will update her medication schedule this weekend.
    She's been looking and feeling good today. We played Yahtzee tonight for the first time in I can't remember how long. She had trouble remembering how to play at first and needed frequent reminding but came round nicely toward the end and "let" me win two out of three games.
    There are also going to be some interesting adjustments regarding her eating habits. The better she feels the more she wants to eat but I think by increasing her activity we should be able to take care of some of that. Not that I don't expect her appetite to increase as she becomes more active and feels better but I'm beginning to think that her problems over the last year or so have been accelerated in part by a vicious cycle that she fell into and I didn't catch in time as she developed anemia: Lethargy drained her alertness, increased her snacking (out of boredom), which increased her blood sugar, which increased her lethargy...and pretty soon we were in crisis mode. I do not believe her anemia was caused by the cycle but now that we are beginning to control it, despite not yet determining its cause, I want to avoid her slipping into this cycle again and aggravating all her other manageable conditions. We've talked about this on and off over the last week and I've begun to slowly institute measures that will help keep her alert, active and as healthy as possible. Emotionally she is not pleased, but she understands the thrust of these new strategies intellectually and I think with a careful eye and much good humored repetition from me she will accept and eventually welcome the changes, just as she did winnowing sugar out of her diet. I expect this means we'll be operating as a team, once again. I can't wait!
    Later.
- posted by gail rae @ 02:00  0 comments   email...this post

 
Through multiple interruptions...
...during an altogether normal afternoon, I have only managed to post 4 old test results, three of which are imagings and one of which is a pathology report on the cancer removed from Mom's left arm, which I will upload at this time. All of them are listed for handy access on Mom's Test Results page.
    It seemed appropriate to include some commentary on why the imaging tests and pathology reports were administered, which I've done. I'll continue this policy if I can remember why each test was done.
    It's time to prepare dinner. I hope to get back here later this evening and add more test results. We'll see, though; I am a multiple interruptions type of girl.
- posted by gail rae @ 18:30  0 comments   email...this post

 
Quick note:
    Although I intended to wait until I'd posted all the test results to publish them the first one turned out to be interesting so I am going to publish it now. It is a duplicate CBC taken on 8/08/03 from the same blood draw, different vials.
    The explanation for this duplicate appears above the results for the second CBC. The two sets of results, taken together, imply an interesting lesson in blood chemistry and blood test technology, if you're into that kind of thing and have no technical medical training. I am and I don't.
- posted by gail rae @ 14:51  0 comments   email...this post

 
My mother occasionally slips into...
...what I call a "contemplative zone" in the morning or when awaking from a nap. If, as today, we have 'places to go and people to see' I have to jog her out of it. I have a routine involving a short series of questions that always works and usually yields an extemporaneous comedy routine. Today, though, her answers to the last few questions gave me reason to pause and do a little of my own contemplating:
    Me: What are you contemplating?
    Mom: Life.
    Me: And what have you decided?
    Mom: Yes.
    Life. Yes. Good idea.
    I'm glad she is still contemplating life from a "yes" perspective. I know, someday, the answer will be "no". At some point, for a variety of sub-reasons and one master reason, we all finally (pun not intended but appropriate) say "no". We have an automatic "no" built into us and as yet have not figured out how to short circuit it. It's possible we never will, because the structure of this existence appears to be built on a yes/no axis. When my mother reaches the opposite pole I intend to face it with grace and magnanimity. But until we get there, hearing her say "yes" to life inspires my spirit.

    I'll be spending the bulk of this afternoon posting and uploading past test results. I may not get them all in today but I'll keep at it over the next few days until I'm finished. Then my intention is to finally address the last issue with which I am still concerned in regards to the previously mentioned Beliefnet article.
- posted by gail rae @ 13:32  0 comments   email...this post

 
We just returned from an appointment with Mom's PCP...
...and it looks like we're good to go. He's "very happy". I'm "very happy". Mom's "very happy". There are a few things I want to report but I'll take care of that later.
    In addition, I do now have copies of back test results and I'll be posting those as I can. I'll mention here each time I end a session of test posting. While I'm thinking about it, I know I still have some history to go but that's coming along very slowly...I haven't yet gotten everything I want to include from 2002 and 2003 for auto-sort/date/upload yet.
    I've got some stuff to do. I'll be back later to work on the last posting reaction to the Beliefnet article mentioned below or, who knows, something else. It seems like I'm always a few postings behind my intentions but, considering all the wordsandwordsandwords I type here, I don't think anyone minds.
    Later.
- posted by gail rae @ 13:05  0 comments   email...this post

 
More info from MCS regarding Big Guns test results:

    Protein in the urine can come from many sources in a non-clean catch. It can come from the vagina, rectum, external genital area, and of course the urinary tract. Since it was a non-clean catch there is really no diagnostic value in it. If Mom was a little dehydrated when the sample was taken...

She is almost always a little, or more, dehydrated when the sample is taken, despite my efforts to pump her up. She was more than a little dehydrated on 8/08/03; so much so that I was pushing water on her relentlessly, even at the lab in the waiting room, and purposely took her in for her draw later in the day than usual (even though I figured she'd register high on blood glucose, which, amazingly she did not) in order to give myself some time to hydrate her, but, well, who knows why, for some reason she just wasn't retaining water that day.

...the protein was there because of that. Also the very beginning of the urine stream and the very end of the urine stream tend to be the "dirtiest" just because of contamination of the area or because a person forces the urine out at those times. If she had any irritation in the vagina or urinary tract the protein was present because of that. At 86 she has experienced uterine atrophy which will tend to cause irritation (even if she is unaware of it) and this could be enough to cause protein in the urine. Of course there are some conditions and diseases that cause protein in the urine, but these are always accompanied by more symptoms. On the whole I wouldn't worry about this unless you feel that the catch is a clean one. Be sure to tell the doctors that this was not a clean catch sample.
    I just read a report that 1 in 10 older adults have protein in their urine. This could be because the filtration of the kidney wears out (especially in diabetics) as a person gets older. One reason the Dr. asked for a protein test on the urine is that it is a good way to access kidney damage - in Mom's case due to the diabetes.
    There is a way of obtaining a cleaner catch without trauma - let Mom clean herself with water and a paper towel or a towelette provided by the Dr. Then tell her to start peeing in the toilet - let the first part pass, then catch a middle portion and let the end portion pass. It's messy, but it does provide a cleaner sample.

    Been there (literally, "hands on" been there, so to speak), done that. Sometimes this does work a little better. The negative urine results may very well have come from relatively successful tries at this but most of the time, by the time Mom or I have finished cleaning her, she has peed away everything in her bladder and we are back where we started.

    Boy, I can't believe how much I wrote about pee. Hope I didn't bore you.

    Actually, discussing Mom's elimination habits and products has become one of the more fascinating topics of conversation for me these days. I think, in this respect, I am in league with parents/caretakers of children (before they get to the "pretend you're not my parents/pretend I don't have parents" age).

    As far as the low IgG - I agree with you about the different ranges. It all depends on the type of test done, the machine used, the reagents used and the range that comes with the particular test kit. It is so hard to go from one facility to another because each facility uses its own testing kits. When you have Mom tested in Prescott you may find differences in the results for this reason, but don't worry, it's just a difference in facilities.

- posted by gail rae @ 09:43  0 comments   email...this post

 
Apologia to my reaction to caregivers taking care of themselves:
    In some important ways my caregiving situation is unique, critically coloring my attitude toward advice given to caregivers to take care of themselves:

1. In my situation with my mother I am a first-time intensive caregiver. I have never been married, have not raised children, have not sought primary outlets by tending to others. I have, in fact, been so fascinated with myself, my interests and the development and practice of my skills and abilities that I tend toward, and prefer, solitary pursuits to social pursuits. From the time I left home my primary (and, sometimes, exclusive) caretaking tasks have been devoted to taking care of me.
       Even in intimate relationships, although I am known as a caring and caregiving friend and lover, it is rare that I 'sacrifice' (meant in the negative) myself to others' needs. When I slip into this mode I am equipped with an internal Early Warning System developed by virtue of having been extremely independent. This has sometimes created a problem for others but it is rare for me to solve this problem by taking on added caregiving tasks if it means I will have to sacrifice (again, meant in the negative) anything I enjoy and find useful about myself and my life.
2. Thus, I think there are many ways that my situation, if handled by someone else, would overwhelm another but does not overwhelm me. As well, my learning curve in this adventure has been steep because I have lead an adamantly self-possessed life. There are many caregiving tasks and attitudes that I do not take on because my Mom & Me Adventure is my first intense adventure in caregiving, so I hadn't previously (and continue to try not to) developed any automatic caregiving habits that threaten to undermine my sense of self.
       As well, there are many caregiving tasks and attitudes which are habits to other lifelong caregivers that I have had to learn while giving care to my mother (and am still learning) and which I welcome as they expand my ability to extend myself to others.
3. When I am overwhelmed in this adventure it is often because I find it necessary to learn how to deal effectively with areas of life I have, up to the point at which I became my mother's companion, avoided in order to keep my life as simple as possible; i.e., dealing with the business world on a sophisticated level and negotiating the healthcare-industrial complex.
       When I become overwhelmed by the personal demands of my role as companion to my mother, which has happened a few times, I am typically clumsy in my reaction and can be counted on to exhibit ludicrously bad behavior. I am, at this time, laboring under the sad and disturbing consequences of one of these episodes that I perpetuated on MFS. As usual, I am handling the fall out in my typically self-possessed way, which may or may not be aggravating the situation, I haven't figured that out. One aspect of how I handle being overwhelmed is sure: Even as I wince at, apologize for and try to make amends for bad behavior on my part, I don't, as well, perform a 180° turn in the attitudes and perceptions that underlie the behavior. This stubbornness on my part causes problems. Although I'm living through some of those problems now, I'm still unsure of how to deal with them except to acknowledge the freedom the other person in this drama has to react in her most comfortable and most protective way. This particular learning curve is not only steep but rocky but, at the moment, being done in forced seclusion. Lucky for me I've always preferred climbing to descending.
4. Because of the uniqueness of my life and the place my companionship of my mother takes in it I am more apt to experience what others would consider onerous conditions as interesting and live through them with involvement, zest and the expectation that they will enhance me rather than shrink me.
5. Because I am in the habit of insisting on "doing my thing" I haven't been prone to 'sacrifice' (meant in the negative) my interests. When I find myself having to do this it doesn't bother me. I don't consider it 'sacrifice'(meant in the negative), as I only do it when necessary and I have confidence in my ability to determine "necessary" circumstances.
       One such circumstance occurred last fall when I was granted, through MFS and MPS, some time to prepare quickly for a class I was planning to take and to which I was looking forward. After attending two sessions of the much enjoyed class my mother's health took an extreme downturn and I chose to pursue intensive medical care for her in another location, which put me out of range of the class. I have not experienced any regret over having to do this (although, it should also be noted, for some unknown reason of which I am very grateful, I am mostly immune to regret, both on behalf of the actions of others toward me and themselves as well as my own actions toward myself and others). I expect at some point to be able to either take the class again or pursue the subject in another out-of-mother-companionship method. I look forward to this but I absolutely do not resent that last fall turned out not to be the right/ripe time. This is pretty much how I handle all events that many long term and much experienced caregivers might consider frustrating.
6. Since I have always considered my self (separation of those two words deliberate) the most interesting aspect of being alive and have always been fascinated with my own thoughts, feelings and reactions to life, I have no inclination, at all, to bury my self, in any way, in anyone else, including myself. Surrender, yes; it is my favorite way of coming to understand people, situations, life et al. Bury, no. I figure if I bury my self there is nothing above ground for me to surrender. Surrender, for me, is an active, rather than passive, activity.
7. As a natural writer I have always journaled, both internally and in "hard copy" (which is to say, for the world, either orally or in written language). Thus, I can attest that journaling is one of the very important and nourishing habits of caregiving, but I don't stop there: To me it is one of the very important and nourishing habits of living.
8. My situation with my mother is also unusual in that her income allows me to be her caretaker without also having to hold down a job outside the home. I worked outside the home by choice in our first years together, first full time then part time then, for awhile, from our home. Now it is best for both my mother and me that my only productive engagement that would normally be referred to as work is being my mother's companion.
9. Because of all of the above, I believe I am in a uniquely qualified position to determine, not only for myself but other caregivers who are, unlike myself, life-long caregivers (and most likely women), when the very common scoldings of today directed at over-taxed caregivers tip the scale from appropriate, helpful advice into yet another attempt to put the responsibility for all aspects of caregiving exclusively on the caregiver instead of scolding those who are taken care of yet perfectly capable of the tasks of caregiving to others (including their caregivers).
       It is interesting to me that both camps, the caregivers and those either not care taking (usually, they are being taken care of) or those giving care in very oblique (and sometimes questionable) ways, have a tendency to feel overwhelmed with this issue and are almost impossible to scold into compliance. Yet we, as a society, choose first to scold the caregivers, who are least likely to argue because of their extreme level of overwhelm-ment and the years of socialization designed to prepare them for "taking it".

    I'll be back later to write and post my specific reaction (although, I notice, I've covered one of those reactions, already) to issues raised in the Beliefnet article Caregiver! Take Care of Yourself! by Debbie E. Mandel.
- posted by gail rae @ 12:19  0 comments   email...this post

 
Information from MCS regarding Mom's blood test results.
Quoted from her email to me:

    I looked at the blood results and to me it looks good. The RDW is a percent of the size distribution of the red cells. It will vary as new red cells are released with abnormal sized red cells such as too small or too big, and with nucleated red cells. As nucleated red cells are released they are larger than the regular red cells. The maturation process for red cells makes them grow smaller until they are the regular size. The indices [MCV-MCH-MCHC] for the blood look good. The cells are individually the right volume and hold the right amount of hemoglobin. The hematocrit is within range, but a little lower than I might expect. This could mean that there are some smaller cells in the blood along with some larger cells, too. They would pack more -- smaller crit; and there would be a wider range of cell sizes - a larger RDW.
    What does this mean? Maybe nothing. It could mean only that her bone marrow is kicking in to correct the anemia. The low IgG could be caused by the allergies she has right now. The eosinophil count (%) is at its upper limit so I would guess she has hayfever. IgG levels can be depressed by allergies or asthma. Unless the doctor says something about these I wouldn't worry. She looks good to me! By the way the urine IFE test that Mom had was also a test for multiple myeloma - she didn't have any indication of it.

    Thank you, MCS! "I am truly happy, three times happy," [Llama Norbu, Little Buddha] and three times blessed, in a variety of unique ways, dependent on the uniqueness of each of you, in my sisters.
- posted by gail rae @ 10:23  0 comments   email...this post

 
It has been impossible for me not to continue...
...musing about my mother's lab results. I continued a search on WebMD and discovered that the low range reference for IgG is 640 there (with the caveat that lab reference range values may be different) so I guess that's why Mom's hematologist didn't mention anything about it.
    Regarding her elevated RDW, after more thinking I remembered that as anemia alleviates blood numbers do not snap into place like stretched rubber bands. It takes awhile for blood numbers to normalize. My guess, looking at the rest of her numbers, some of which are just over the range border, is that he is not concerned about this one as he expects it to settle into normal reference range.
    What I read about protein in the urine, though, puzzled me. It is typical of, among other things (none of which apply to my mother), damaged kidneys. This is not the first time protein has appeared in her urine and at much higher levels, almost three times today's level in January. Yet in other urinalyses to which he referred (of which I do not yet have copies) she has bounced back and forth between negative and positive. According to his records, her last test for protein/urine/random was negative. As well, all her kidney numbers are showing no indication of kidney damage and haven't, even as they have signified her anemia.
    My mind boggled from lack of sleep and working these curiosities over so, when my mother laid down I decided to do the same. Within minutes a possible answer to the mystery of protein in her urine came to me: She has never had a clean urine test. Unless she were to be catheterized it is virtually impossible to get a clean urine test from her for more than a few reasons. Let me describe the process of what has happened every time a urine sample has been required of her since she began seeing PCPs from this particular office:

1. Into the bathroom we go, where ever we're at (this has also happened at home where we're often, finally, sent to collect the sample). Invariably, if she pees alone, regardless of where she is, she holds the cup in her hand and forgets to take the sample. I've learned that I have to take the sample.
2. She claims she can't pee. While she is claiming this her urine stream begins, often unbeknownst to her.
3. I shove the cup (which she has trouble managing) between her legs, usually grazing her skin at least a few times, hunting for the stream, finding it and getting what I can.
4. As far as the wipes provided for cleaning the area around one's urethra and, for women, the entire genital area are concerned, every time we've attempted to use them, by the time she is or I am done "wiping" she has peed out any urine she was holding. We don't bother with that, anymore.
5. If I've only been able to get a little urine and we are at a medical facility I take the sample out to show a lab tech and ask if that is enough (depending on the type of urine tests requested sometimes it is).
6. When, for whatever reason, we have no luck, we take a sample cup home.
7. The process described above occurs at home with one difference: I follow her around until she alights on the toilet and quickly shove the cup under before her bare butt has hit the seat in order to gather what has already begun to flow.
8. If we are unsuccessful we keep trying but, typically, there is a time limit on how long the lab will wait for a urine sample if they already have the blood. We have, on occasion, been told "a urine sample is no longer needed", which is polite medical code for, "forget it, maybe next time, or, maybe the blood work will show that a urine sample is unnecessary."
9. As far as the technique for guaranteeing a "clean" urine sample flowing through her body is concerned, which consists of one emptying one's bladder completely, drinking several ounces of water and waiting for it to flow through then allowing a bit of the stream to be voided before filling the sample cup, well, medicine can forget that we'll ever again be able to do this.

    As I was mulling over these details and trying to drop into Nap Waves it occurred to me, considering all the skin cells, vaginal secretions and whatever is in her underwear that leaves its mark on her genitalia, probably some of that stuff contains protein. I wonder if this is where her curious protein readings, which never show with any kind of regularity, come from.
    I wish I had thought of this when I was talking to Mom's hematologist. I know that he would not have dismissed my idea out of hand without explaining to me why this couldn't possibly be the problem, if it couldn't. Although I remain dedicated to her PCP he tends to get himself into overbooking frenzies and doesn't consider my questions. Sometimes he doesn't even answer them with a mere, curt "yes" or "no". If I catch him on an easy day I can carry on a reasonable medical conversation with him. If not, he has a tendency to pooh-pooh anything I say. Sometimes, though, I find out later that I am right or my ideas have merit, usually from another doctor and in arrears, as with the colonoscopy. I'll see what he says when I talk to him on Thursday. I may go back to her hematologist with this idea, later.
    Something I forgot to record that is important: I mentioned to Mom's hematologist that she responded with amazingly restored vitality to the accidental colonic preceding the colonoscopy and that the effects, although somewhat modified, have lasted. "I'm thinking," I said [as I had mentioned to her PCP during one of his high frenzy days] that when lethargy returns for more than a few days and I can't seem to revive her by other methods, of administering light, modified bowel cleansing from time to time."
    When I mentioned this he was hunched, head down, over my mother's numbers. By the time I finished he had fixed me with bright eyes, was smiling and responded, "Absolutely! Good policy!" and lifted an upturned thumb in the air, which is a bit out of character for him being that he is a reserved man.
    I guess I'm right on that one, too. I wonder how many other of my ideas have been right but haven't been acknowledged as such because other doctors (her PCP isn't the only violator here) simply haven't had the inclination to listen to and consider what I have to say.
    Doctors and patience. That's where this post needs to go. I had originally intended a free standing essay on this topic. Perhaps I'll collect all this stuff onto one page for convenience, adding what I have already written. The story never seems to end. Maybe I shouldn't be writing an essay but a free flowing litany on this subject with it's own page.
    Dinner time is approaching so I continue not to have time to concentrate on my second posting regarding the beliefnet article. Maybe later tonight. Maybe early tomorrow. We'll see.
- posted by gail rae @ 18:13  0 comments   email...this post

 
New Test Results - Good News!
    The test results have been posted for draw date 8/8/03. Almost everything looks good. Her RDW is high, which I need to look into, and her protein/ urine/random came back positive (it should be negative), which was a mentioned concern of Mom's hematologist. I'm wondering about her low IgG, but he didn't mention it and I didn't have the lab results to actually look at until he spirited out of the office. Over all, he pronounced Mom as no longer suffering from anemia, was very pleased with her progress, was torn about whether to "cut [Mom] loose" or have her come back but finally decided to write her PCP a note about the positive protein/urine/random result and have us come back on February 17, 2004 at 1100. I'm writing that for my own reference and to help paste it into my conscious brain.
    Her weight was stable at 150 (although, it looked to me like 149 but the nurse couldn't decide and went for 150). Her blood pressure was "a little low," said the nurse, at 102/62. Her pulse was 80 and her ear temperature was 97. I took it this morning because she felt so warm but her warmness was a result of snugness in her bed and I measured it orally at 97.1. Seems a little low to me but no one mentioned it.
    The hematologist greeted Mom by mentioning that he was pleased to see her "big smile" and Mom responded, "I saved it for you."
    He smiled back and said, "I'm blessed!"
    Later he mentioned Mom's smile and I teased him (and her) and said, "It's her secret weapon." He agreed.
    There were two changes I noticed in Reference Range numbers since 1/23/03 (the last time this particular battery was ordered on Mom). The upper calcium range was changed from 10.2 to 10.4. Curiously, on her 1/23/03 test, Mom registered "high" at 10.4. Today, she registered "normal" at 10.4. As well, the potassium/serum Reference Range was changed from an upper cutoff of 5.1 to 5.2. This is bizarre. I'm going to call MCS, let her in on the good news and ask her whether this changing of reference ranges is typical.
    I checked WebMD for information on high RDW (Red Cell Distribution Width). This is what I found, with the portion underlined, by me, that appears to apply to my mother (except for the fact that her hematologist seemed not to take note of it and pronounced her "no longer anemic", anyway):

One commonly used method for classifying anemia is to categorize the anemia by the size of the red blood cell as measured by the mean corpuscular volume (MCV). Microcytic anemias are associated with an MCV less than or equal to 79 femtoliters (fl) and include iron-deficiency anemia, thalassemia, and anemia of chronic disease. Macrocytic anemias are associated with an MCV greater than 101 fl and include anemias related to vitamin B12 or folate deficiency, myelodysplasia, and liver disease. Most anemias are normocytic, meaning that the MCV is in the normal range. This category includes myelophthisic anemia (anemia due to neoplastic replacement of the bone marrow), most chemotherapy- related anemias, anemia due to renal or hepatic dysfunction, hemolytic anemia, and aplastic anemia. However, a mixed red blood cell population consisting of both microcytic and macrocytic cells (anisocytosis) may indicate a combined etiology, for example chronic blood loss (microcytic) with resultant reticulocytosis (macrocytic). In this situation, the MCV may be in the normal range, but the red cell size distribution width (RDW) would be elevated."

    One more mystery to be solved.
    I'll be back later...to ruminate on the plight of caregivers being responsible not only for taking care of their charges but themselves as well.
- posted by gail rae @ 14:32  0 comments   email...this post

 
Consider that I'm thinking out loud in this post.
    If you've visited the What's Next section on the Updates page and perused the To Do List you may have noticed a tick to myself about checking Lisa Alther's Kinflicks "for musings about my mother's death". Although I haven't yet looked this up or written on it, this post covers a related subject; musings about the spiritual/psychosomatic origins of my mother's dis-ease of iron deficiency anemia. I was prompted to think about her anemia from this perspective by an article I read yesterday in Beliefnet's weekly email newsletter: Caretaker! Take Care of Yourself! by Debbie E. Mandel, first mentioned a few posts previous. In the article Mandel introduces a caretaker who became so caught up in caretaking for her family that she martyred her life for several years. She "became dangerously anemic and no doctor could figure out why, until one hematologist suggested, 'It could be stress. Blood symbolizes family [italics mine], and your family is stressing you out!'" Once she grieved her mother's death (the object of her original caretaking mission which led her into caretaking for other members of her family after her mother's death), married her fiance, left her family, "...let go and live[d] her own life joyfully...", including releasing her guilt for having left her family to take care of herself, her hemoglobin rose and stabilized.
    I have no reason to doubt this. I have a vigorously nodding acquaintance with the "psycho" part of "psychosomatic" in regard to my mother. It wasn't the specific postulated reasons for the rallying of the caretaker's hemoglobin count that caught my attention, though. It was the association of blood with family and iron deficiency anemia with a family who was unwittingly and inconsiderately stressing the the anemic caretaker.
    It has set me to thinking about what the psychosomatic causes underlying my mother's persistent anemia might be. As I have been thinking out loud about this, here, I've been throwing these ideas out for my mother's consideration, as well. Although there are some interesting family dynamics [lack of contact being a major one since my mother's immediate family is very important to her and now contains most of her friend network (which has been a lifelong life style for her)] that could cause my mother to feel stressed about her immediate family, we've discussed these. She doesn't feel that these are causing her any stress or guilt and I believe her. She is, always has been, supremely philosophical and phlegmatic about the ebb and flow of family relations and I've never known her to be bothered by family dynamics, let alone stressed by them.
    It occurred to me as we, bit by bit, dismissed family=blood as a source of "stress", that perhaps in my mother's case the important "psycho-" element of her anemia isn't the blood=family factor but the iron=strength factor and that her personal strength has been sapped, perhaps by a member of her family, most likely me. So, we explored this. Here's what we came up with:
    Although my mother's anemia has only surfaced within the last year (probably around August of last year), other aspects of her health have been troublesome from the point of view of her personal strength (both -somatic and psycho-) for almost two and a half years. Although this jibes, more or less, with how long she's been on metformin it also jibes with a few other circumstances:

1. Her health coming under severe scrutiny and treatment by doctors on whom she has rarely had to rely;
2. As her lethargy developed and affected her ability attend to her personal business I began stepping in and taking over. Previous to this, although I was providing the service of handling her business for her I was also discussing it with her, talking with business people with her rather than in her stead and I always allowed her final say, even if it, occasionally, got us into trouble and we had to recant. Once lethargy gained a foothold, though, she not only deferred to me, she slowly bowed out of even discussing these matters with me or anyone else. I, without question, took over, including such things as carrying all the money, paper and cards, handling conversations on my own, making decisions on my own (although I still let her know what was and is going on and solicit her input; it's just that, for some time, she's waived input), etc., even turning off the ring on the phone to make sure she did not make a decision or agree to something of which I would be unaware but would affect us profoundly later and surprise the bejesus out of me.
3. Her ability to entertain herself also flagged (she's always been excellent at being able to entertain herself) and she got into the habit of looking to me for the entertainment factor in her life. If you've read any of the history you know that I have a strong loner streak and tend to consider socializing as 'up time' and being alone as 'down time' (to put it another way, socializing, for me, is a type of work, although a welcome one at which I'm good and that I enjoy; my real joy, though is to be left alone to my own devices to pursue my interests, most of which are decidedly solitary). So, I haven't been the best of entertainment providers for my mother and on occasion have sabotaged her efforts to get me to entertain her.

    While she completely rejected the blood=family connection, the iron=personal strength connection made some sense to her. As we talked we began to suggest ideas for how, now that her physical health is rebounding enough for her to look forward to having energy to burn, perhaps it is time for both of us to reinvolvee her at an easy pace in the accoutrements of her life; for us once again to be partners, as is reasonable, in her and my lived-together life.
    For instance: For the past two years she has been completely uninterested in working with her accountant on taxes. I suggested that next year we should go together again. For two years we have ignored our twice yearly visit with her stock broker and she has not discussed stocks with him, even during the rather critical period when her holdings were converted to an annuity. Time for us to reinstitute this tradition, I suggested. She enthusiastically accepted both these ideas.
    For a long time we have rarely hosted family in either of our residences for any reason. Time to start doing this again, once we do the repair and remodeling that have become necessary on both houses. Great idea, she thought. We should begin again to initiate visits rather than waiting to be asked as my mother feels up to it. Yes, good idea, she again confirmed. Mind you, all this enthusiasm for involvement in her life is actually a re-enthusiasm for re-involvement.
    Before I initiated this conversation with her this evening she decided to go to bed at 2130 which is a bit early for her. I insisted, though, that she couldn't go to bed without a thorough foot and leg rub. This was a good idea, as she has begun to retain water normally again within the last 12 hours or so. While she was not overly saturated, a good foot and leg rub keeps her body from refusing to release water. It was during this foot rub session that I started the above conversation. It became so animated and involved that she didn't go to bed for a little over another hour.
    I have no idea if her anemia will improve. I suspect that her numbers, while they may have rallied a bit for the Big Guns Draw on Friday, probably weren't yet back to normal. Something tells me, though, that since our discussion tonight (especially our consideration of strategies to reinvolve her in her life and the lives of those she loves, which should automatically increase her feeling of personal strength) I shouldn't be surprised if, at some point in the next month or so, her anemia recovers. I'm not going to outright expect this...I am circumspect, so is she. She thinks the psychosomatic ideas I am proposing are a bit "out there" and I know she's not going to count on them either. But, in her words, "We'll see." I think this consideration, tonight, of in-the-blood iron=personal strength might work at least as well as the accidental colonic that the ill-considered colonoscopy required. At least I am optimistic about this.
    In the meantime we are still planning on releasing ourselves, finger by finger, from the clutch of doctors, as we've agreed, for week or so, that "it's time" for this. We are still going to Prescott and Mom seems more up for this than she has in a long time. I will continue, overtly and surrepitiously, to monitor her with an eagle eye and seek out professional consideration if I think it's necessary. And, we'll both pay more attention to her personal strength quota. It certainly can't hurt.
    Although I intended to also write, tonight, on my observations and opinions of the current social concern over caretakers taking care of themselves I think I'll put that off until tomorrow. I've got an early call in the morning. We will be seeing the hematologist tomorrow and I still have some things to do before retiring tonight. Here's a teaser, though: I've lately begun to wonder why it is that, in this country's society, overall, at this time, we are not only depending on caretakers to take care of others but, now, we're charging them with the primary responsibility for taking care of themselves. I know that the current "personal health" fad dictates that one must be responsible for one's self as one is able. When I look at it from the imagery of a set of scales though, it looks more like what we are doing, in pushing this seemingly wise strategy so vociferously, is simply moving several more weights over to the already tipped plate then blaming the person struggling beneath the plate if they can't reach up around the lip, pull some of those weights off and move them to the lighter plate dangling high above their reach. Think about it. So will I.
    If events allow I'll write more on this tomorrow.
- posted by gail rae @ 21:26  0 comments   email...this post

 
A little felicitous news.
    This morning I awoke my mother at 0830 to begin preparation for going to her regular Monday hair appointment at 1130 (I always give both of us plenty of time). Much to my surprise, she ambled into the bathroom carrying a clean bra. I should explain, here, that she wears a bra to bed, usually the bra she wore the previous day.
    Thinking she must have had another water shed night, I went the opposite way into her bedroom to change the sheets. They were dry.
    "Mom, did you sweat through your bra?"
    "No." She sounded and looked surprised that I'd asked.
    "Is there some reason you feel you need to change your bra immediately?"
    "Yes." My mother likes to tease me with one word answers. It always prods a smile out of me.
    "Okay, I'll bite, you've decided to astound the fashion world by wearing bra-over-bra."
    She chuckled. "I was planning on taking a bath."
    This confused me. It has been a couple of years since she's volunteered to take a bath, let alone immediately upon waking. "Uhm, okay, that's fine. You know, you usually bathe after breakfast..." I wondered if I should have bitten my tongue before saying this.
    "I think it's a good idea to bathe when I wake up."
    I believe I heard the angels sing! "Well, good! I agree with you. Would you like me to draw your bath water?"
    "Yes, thank you, that would be nice."
    Although the day has continued low key and I had to remind her a few times why she had bathed and turn her back from a nap 15 minutes before we were due to leave for her appointment, it has, overall, been active and she just announced, as I began this post, that she thinks she'd like to go out to eat.
    "Sounds good to me." So, I had intended to work on my reactions to a few issues mentioned in the article in the preceding post, but, damn, if the woman wants to go out to eat I think we'd better go!
    I'll be back later this evening. You can count on it.
- posted by gail rae @ 16:53  0 comments   email...this post

 
I intended to write two more posts...
...in reaction to an article I read in the most recent Beliefnet newsletter entitled Caretaker! Take Care of Yourself! by Debbie E. Mandel. I have some reactions to record to two issues raised in the article: One about anemia and how the article is provoking me to think about my mother's very persistent anemia; the other about caretakers being expected to take care of themselves.
    I spent a bit more time than I expect bitching in the previous post and I need some sleep before tomorrow begins, early.
    Just to let you know, I have not read any of the commentary on the message board accompanying the above mentioned article and I don't think I'll be doing that until after I muse about those issues about which the article is prodding me to write. I'm hoping I'll get back here some time tomorrow to post further on this topic. As well, I've asked Beliefnet for permission to quote from the article. With luck, I'll have that permission before I begin my commentary on these issues tomorrow. If not, I'll comment without direct quotes, then add those later.
    My eyelids are heavy. I need sleep. Until tomorrow, then...
- posted by gail rae @ 01:00  0 comments   email...this post

 
By the time I finish this post...
...it will appear as though I've missed a few days and I have. I think I'll be posting thrice, tonight. This first post will be a general, "how's Mom" post.
    In the last few days Mom has taken a turn for the lethargic and it's been difficult to turn her back. Although one of the evenings included company her enthusiasm was unmoved and has not been up to par.
    The main problem has been the heat. Friday was hair day, we also took a short trip to Costco, and she had her Big Guns blood draw. Unfortunately the dank heat was so bad that each time she exited the house, the car or a place of business, its effect on her was visible...it was as though she was being slammed by it. Typically she doesn't react this way to the heat but it has been unbearable. Thus, I wasn't able to get her out at all on Saturday and Sunday and I had a devil of a time keeping her up, including when we had company.
    She is still looking a bit wan and losing water at night, although not nearly as much as the couple of days when water loss exhausted her. I've continued to pump her with liquids and high sodium, high potassium foods and her dehydration eases if I can keep her out of bed, which I'm having trouble doing. Otherwise it all goes right through her.
    I, again, gave her a second Detrol last night and the night before but it seems to make no difference so, since the effect of Detrol is also mild dehydration, I sent her to bed without the second pill tonight.
    A little over a year ago two of my sisters were visiting us in Prescott. I had an entire book to read in a week for a class and they decided to grant me some much needed time to accomplish the task by paying attention to Mom in my stead. I remember one morning they were attempting to get her up (just prior to her having a mini-health crisis and being pronounced anemic and after a long series of days in which she simply refused to move much) in order to usher her into her bath, feed her breakfast and take her out. The two of them worked on her, first trying to tease her out of bed, then becoming stern, then attempting to physically push her out of bed. I believe they finally succeeded but both were unpleasantly surprised by the effort it can sometimes take to get her up and mentioned their amazement to me. I remember mentioning something about how now they could see why I sometimes just give up.
    Well, today I had to physically push her out of bed. Yesterday the same thing happened. As well, both days, I had to become unusually stern with her to keep her up. It would have been nice if I could have interested her in doing something...I tried hard. I read to her and she chose to doze in the chair. I pulled out a deck of cards and she refused to pay attention to the game, continually letting her hand slip through her fingers. We had another record heat day with the dew point at 50% so I did not insist on her going out with me on the few errands I had to run. The memory of her experiencing the intense heat on Friday as a physical slam was much too fresh and I could not bring myself to put her through that, again. But toward evening today I broke down and became exasperated with her.
   I rarely become exasperated, although sternness is not unheard of, especially when I am explaining to her why she must do certain things. Exasperation, however, always takes on an hysteric tone into which I only fall only when everything else, first gentleness, then teasing, then humorous cajoling, then sternness, then ordering her (which usually involves physically leading her through whatever it is I want her to do or where ever it is I want her to go) doesn't work. My exasperation is always an out-of-control emotional reaction and as such it usually surprises my mother and, thus, it works, as it did tonight. It isn't a pretty picture, though. Today, in order to get her to stay up, when we were facing off in the hall as I blocked her way into her bedroom I reminded her that if she did this one more day she would be certain to have a fecal accident tomorrow, I was sure she wouldn't want that and neither did I. I don't mind, I explained, cleaning up after a surprise fecal accident but when I know it can be prevented but for her refusal to cooperate and stay up long enough for her body to work, I mind very much. This didn't phase her. So I began, in a higher, tighter tone, to relate to her all the ill effects her body and mind were now suffering from her refusal to get out of bed, including the catch-22 that sleeping this much when she is tired only increases her tiredness. Finally I challenged her, in a voice bordering on that of a drill sergeant: "Look," I said. "I can't seem to get you interested in anything and it's too hot to go out so I know you're going to bed out of boredom. Well, you can just as easily be bored in front of the television as you can in bed, and, at least you'll be sitting up so your body can function more normally. If you want to be bored you're going to have to be bored in front of the TV this afternoon."
    That worked. My mother is a woman of incredible will, regardless of whether she is lethargic or energetic. However, despite her will she cannot will her body to function properly when she spends as much time in bed as she has over the last few days. A not so gentle reminder of this usually manages to get her to stay up at least for awhile.
    The truth is, though, it is exhausting for me to do battle with her will when she is determined to sleep and I hate it when I fall into exasperation and find myself trying to shame her into staying up. When I do this I experience shame as well and find myself wondering for a good hour or so afterwards if being with me is a good situation for her and if she wouldn't be better off with one of my sisters where there would at least be the stimulation of others besides me on days when getting her out is either impossible or, for reasons of weather, unwise. I never resolve this issue nor the wondering that follows. And when her energy picks up it is easy for both of us to forgive me my lapses and forget the incidents.
    Tonight, though, I find I'm not letting go of the day so easily. Regardless of how unpleasant it is for us I'm going to have to get her moving again. This is why it is so important to me to get her up to Prescott right now. She never tires of people watching in the Square there but she tires easily of going to the mall here to people watch more than once every couple of weeks. She tires of Costco, although lately she's been going regularly simply because she's begun to imagine herself as being equally responsible for the household errands as me, which is good. But this weekend it didn't matter to her. She had plugged herself into her lethargy cycle and I simply couldn't get her out of it, not even for company.
    I'm going to try insisting that she take a bath every day instead of just on the days when something that has been planned is happening. This is an incredible chore, as, when she knows she doesn't "have to" take a bath she is as ornery as an angry child in the tub. Unless I take on my "stern" persona and literally order her through every step of her bath she'll stare me down in defiance and continually attempt to let the water out of the tub.
    I guess, too, I was expecting her revitalization to be hitch free and it isn't. Lesson being learned, with a certain amount of pain.
    So, that's what's been going on this weekend.
- posted by gail rae @ 00:42  0 comments   email...this post