Holidays and Pill Troubles (or Two Steps Forward and One Step Back)

It’s been a while since my last update, and I apologize for that, but it has, overall, been a very good week.

Honestly, I’ve been enjoying decorating the house for Jacquelynn and trying very hard to bring as much holiday joy into the place as possible, and a lot of things have been sidelined in favor of that task.   We’ve also had a run of incredible weather and have therefore been taking more and more of her beloved brisk walks through the neighborhood.

I even took an hour-and-a-half to myself for a motorcycle ride yesterday. It’s never easy leaving her here alone, but she insisted I go, and I must admit that I had a very good time just riding and breathing.  She had a nice nap while I was gone, too.

Jacquelynn has, for whatever reason, taken a bit of a step backward in relation to taking her pills.  As I’ve mentioned before, between three prescriptions and all her supplements, she now has between 37 and 40 individual doses to take daily (some are only 2-or-3 weekly).  By working as many of these into her food (smoothies, primarily) as possible, I have her down to 20 actual pills daily. These have begun to give her a problem.

Initially, and for many weeks now, Jacquelynn has simply drunk her water or cranberry juice and shot each pill down on command. She has begun, however, to fight them. She moves her jaw around, maneuvers the pill about her mouth with her tongue, and makes a very tense production over almost every pill she takes. I think it began several days ago when one, in particular, gave her fits going down, and she finally resorted to chewing it.* Since then, she has difficulty with even the tiniest of them, often requiring repeated attempts with each.

Unfortunately, my attempts to help are sometimes interpreted by her as complaints, and occasionally even insulting. She is still very sensitive and emotionally fragile. There have been multiple tear-filled confrontations as she felt I was judging or criticizing her when I was simply trying to help.

Yes, I still make the mistake of assuming she’ll understand my intent when I reach out. And sometimes, she will. More often, though, she feels put down and will respond with a tearful “I’m not stupid.” I’d give anything to avoid ever letting her feel that I’m calling her such a thing, but it can be difficult to see her reactions coming. I never really know what to expect as far as reactions from her, to be candid, and that’s both frightening and exhausting.

On a lighter note, she seems to have completely avoided any adverse side effects from going off the Risperidone. Aside from the few times she awoke and thought she saw something scary (usually my shadow on the ceiling from the nightlight), there hasn’t been a single scare. I’m going out on a limb and conclude that she’s past the need for any antipsychotics.

But she still struggles for words, and is, in fact, having a rough couple of days on that front. The more difficulty she has in finding the right word or expression, the more she feels as if she’s not actually getting better, and the harder it can be to lift her confidence again. I need for her to stay confident. She needs to feel confident, because if she stops believing in her success, then she will inevitably fail.

But thus far today (it’s almost 6 p.m. as I write this), her pills have all gone down with relative ease. We took a trip to the library to pick up a book I had on reserve and did a little shopping, and she always enjoys her time out of the house. She has even asked if she might read the book when I’m finished with it. Now, it has been a long time since she expressed an actual desire and intent to do any reading, and I’m extremely pleased to hear her do so. I’m very curious if her short-term memory will allow her to get anything out of it. Fingers crossed, I’m very hopeful.

Tomorrow is another warmer-than-usual day, though it may rain a bit. We’re still planning a couple of walks and a trip to Whole Foods and Costco. She’s looking forward to taking a drive tomorrow evening to see some of the outdoor light displays in our area.  That used to be a favorite activity this time of year, but we haven’t done so in years.  I’m hoping it’ll make her smile.

 

*Fortunately, this particular pill was not one which forbids chewing.  Some few of them prohibit cutting or in any way breaking the pill before swallowing.

And, yes, I know I’ve used this lead image before.  Still, it seems more than apropos of late.

Small Steps Are Still Steps. Always Forward.

Now, that was a nice weekend! It was peaceful, fun, and had a great feeling of positivity and progress.   We listened to Christmas music and got a start on decorating the house, too. I have five of my planned nine trees up thus far.

I think maybe some of the new meds (hormones, primarily) are beginning to level. Her moods are a bit more stable than they were the first few days, for one thing.   Also, she seems to be a tiny bit better with short-term recall. This isn’t something I can quantify, rather more of an impression. Still, it feels a bit better to me.

There are, of course, still issues, some old, and some new. As her capability for independence has increased, I’m cautiously letting her do more things for herself, though I try to at least be close by if it’s anything of importance or carries any level of risk.   For instance, taking pills. As her motor skills have improved, she’s begun to take issue with me placing the pills into her mouth, so I will just put whatever she needs on the counter in front of her and busy myself somewhere close.   Occasionally (I’m guessing because she’s grown used to me doing it for her), she’ll just drink and swallow without the pill. Unfortunately, when I remind her of the pill, she thinks she’s taken it and doesn’t understand why I’m asking her to do it again. The cross feeling fades quickly, fortunately, but I wonder if that’s likely to change as her short-term memory continues to improve.

She still loses track mid-conversation and struggles for the right words. For some reason, nouns are the most difficult. The phone is “so you can call”, for example. Names of things and people are what she struggles with most, and I do understand that this is common. If the brain has to sacrifice something, nouns are more expendable than verbs.   Fight-or-flight, the most primal part of the primitive brain, seems almost always the last part to go as a patient declines, and that impulse needs no nouns, only verbs.

I’m also taking as an improvement the fact that she has consciously started a very important (to her) new daily regimen; she has told me that she wants to make sure that, at least once every day, she says “thank you” to me for all I do. I’ve told her it’s not necessary, but I do know how important it is to express your gratitude, so I’ve stopped discouraging it, and in fact, I believe it a big step that she made a commitment to do so all on her own, and she’s done so every day for the last week without anyone but herself to hold her to her promise to do so.

Personally, I’m calling that a clear improvement in memory.

Tomorrow we’re running an experiment. I’m going to a movie. I was going to go Friday, but I became a little uneasy about it so I postponed it.   It’s not a movie she wants to see, and I’ll be gone about 3 hours, total. She’ll have instructions to call me if anything comes up, and of course, I’ll leave the phone on (and probably hold it nervously in my hand the entire time). This will be the longest I’ve left her alone since I left my job at the beginning of September. I was away from 8-12 hours each day then, and she’s definitely better now, so this shouldn’t be a big deal.   But I’m nervous and I can tell she is a bit, too. But she’s also the one insisting I go. I know she’ll feel guilty as hell if I cancel again, so barring a setback, I’m figuring on going.

Wish us luck, and once again, I’m very grateful for all your thoughts and prayers. Many of you comment on these posts via Facebook, and I welcome any comments, questions or any other input you may wish to offer, either by commenting here at the blog or on FB.

I also want to thank a couple dear friends who have come forward and volunteered their time to help me get a bit of time to myself. You know who you are, and it remains very possible I may take you up on your kind offers.

Jumping At Shadows

There are still those moments…

 

When she sits up in bed, terrified of a shadow on the ceiling;

 

When the bed just feels off to her, even though nothing at all has changed, and only by reading to her and taking her focus off the fear can I help her to relax and fall asleep;

 

When I try to take her glasses off without waking her completely and she immediately gets cross and almost mean, wanting her glasses back right now (to which I always accede);

 

When she gets so angry at me for not listening and needing to be “reminded” of what she said in a conversation that never happened (and which she’s apparently been having in her head)…

 

Yes, there are still those sobering moments. Those instances when I wonder, just for a second, if I was projecting and imagining all the improvements I’ve cataloged over the last couple of months. The nights I cry myself to some close semblance of sleep where the nightmares rend and tear at me endlessly until I awake in a sweaty start only to learn that I’ve “slept” mere moments.

I sleep better than I did when I started this project, but that’s a qualified statement. Better still ain’t awesome. But it is better, and sometimes she can climb out of bed en route to the restroom without waking me at all until she hits that one creaky floorboard.  Every day and every night I learn something new about how to better serve her needs and help her on this path.   And every day I do chronicle a new improvement, whether in speech, fine motor control, eating habits, physicality, or cognition. They’re all related, and they’re all vitally important. And no, they’re not my overactive imagination like my doubting mind sometimes asserts. Jacquelynn is getting better, and at a much faster rate than ever predicted by the doctor.   Her hairdresser made a special point to make me aware of the improvements she could see since her last visit, which was two months back, just before our trip to Savannah to see Dr. Ross for the first time.

So yes, fear is a constant companion, but it is one to which I do not surrender. I listen to what it has to say, and then I process that information like any other data. Then, albeit with difficulty, I set it aside and move forward. For Her. For Us.   I move forward in love and in confidence and in excitement for what the day holds. Because it holds Us, and Us is the greatest thing anyone can be a part of.

Consume Mass Quantities!! (of pills)

Well, with most of the labs back and a fair grasp on most of the causes for Jacquelynn’s condition, the doctor wrote her a couple of prescriptions and boosted her supplement intake.

To begin with, her hormone levels were completely out of whack, so she’s been prescribed Estradiol and Progesterone in addition to an herbal supplement called EstroSense, which is designed to support production of key hormones. Also (yes, Terri, you were right about this one) her thyroid, in particular T3, which is a key cognition supporter, were low, and she was prescribed a medicine called Naturethroid, which is apparently facing some production issues. Since that can’t be had at all right now, an alternative was selected and we’re taking it now.

Other than those, everything else Dr. Ross changed was related to specific vitamin deficiencies. For example, Jacquelynn’s been on a daily D3 since March; originally 6000 IU for the first 60 days then 2000 IU daily thereafter. However, her D levels are still quite low, and Dr. Ross has changed her to a drop, to be administered under the tongue, 5 drops daily. We’re still waiting for that one to arrive.   In addition, she put us on a buffered Vitamin C powder (2 grams daily), a 100mg B6, and a sublingual Methyl B12 in 1000mcg (1 daily, and still awaiting shipment), and lastly, a massive “Ultimate E” vitamin E to be taken thrice weekly..

Other supplements added are: a CoQ10, a 600 mg Curcumin (4 daily), a Methyl CPG (a homocysteine balancer and methylizer), and CystePlus, a homocysteine supplement.

So, in the grandest CONSUME MASS QUANTITIES tradition of Beldar and Prymaat Conehead, this raises Jacquelynn’s daily pill count to 35, plus the vitamin C powder and the three-per-day BEG nasal spray. Not an easy task for anyone, and though she’s getting incrementally better every day, a TON to ask of her. But she’s 100% committed to her recovery, and so am I. I do what I can to moderate the burden by breaking several of her dailies down and mixing them into her smoothies. Even doing this, I’ve broken the rest into 6 dosings, approximately 2 ½ hours apart, throughout the day. I would be exaggerating mightily to say she’s enjoying it, but she’s so strong and so committed. She’s handling it without complaint, which is very likely more than I’d be doing if the tables were turned.

Several days into this, I will admit that her emotions are a little bit wonkier than before, which I attribute (right or wrong? Who knows?) to the hormones. I’m quite sure her body will adjust to the increases quickly.   I also note, on a strange but potentially important point, that her hair seems much healthier and is growing thicker and shinier than it has in years. As I’m the one showering her and washing/drying her hair, I noted just this morning how some of the spots that had grown thin were filling in very nicely.   It dries softer and combs more easily than it ever has in the ten months or so I’ve been doing it for her. In my view, this can only be a good sign.

She still struggles occasionally with finding the right words, and is even less patient with herself when this happens than she had been, but that’s because she does feel better, so she naturally thinks everything should be back to normal, and the reminders that we’re not there yet (and still a long way short of it, of course) hurt her deeply. She does recover (I mentioned how very strong she is, right?), but it’s a difficult few moments for her when this happens.

The improvements which I see, many of which I’ve shared with you here, are real and quantifiable. They’re also coming more and more quickly. She’s legitimately excited for Thanksgiving and Christmas this year, and I’ll be decorating this weekend to help elevate the spirit in the house.   When I asked her what she wanted for Christmas, she first just said that she wanted to spend it with me and that was enough. We say this to one another every year, of course, but always end up doing more. When I pressed her just a bit, she stopped and gave the idea due consideration. When she reached a decision, she initially struggled just a little with expressing it.   Finally, she smiled as the right words come to her, and said, “I want to dance with you.”

For the record, I’m no dancer. I have less and poorer rhythm than Elaine on Seinfeld. She used to be quite good, but obviously her physical coordination and muscle tone have decreased strikingly in the last year and change.   But we’re going to take it slow, maybe try a lesson or two, and dance to Christmas music in our kitchen on Christmas Day.

After she opens a couple of presents I’m not supposed to get her.

Lights

A quick (and vastly oversimplified) lesson in the mechanics of Alzheimer’s:

As the disease progresses in the brain, neurons and synapses become blocked and inaccessible. In essence, they die. This neuronal death is a very normal part of daily life; just like your skin (or any other organ) brain cells die and are replaced constantly. With Alzheimer’s, however, the brain’s ability to generate new tissue is compromised, and these regions of the brain begin to shut down. This used to be considered permanent and irreversible.   Traditional medicine still believes that. Still, as available brain storage decreases, the mind must select the most important things to preserve. This is basic survival; preserving the aspects most important to continuation of the organism. Thus, for example, retention of a beloved childhood experience may be sacrificed so that the ability to speak is retained. A common analogy pictures the brain as a massive house: as the disease progresses, more and more rooms are locked off. Eventually, no access remains beyond the entry and vestibule.   The lights are all off and the doors locked.

Yesterday, I marked an unmistakable example of a light coming back on, and it may be the single most thrilling moment of the last year.

One wouldn’t typically share this sort of information about one’s wife, but as we set forth on this path, such concerns take a back seat to telling a very important story. Context matters.

So…

Since her hospitalizations late last winter, Jacquelynn has been very uncomfortable wearing underwear. It simply feels too close and triggers her no-longer-latent claustrophobia. As a result, she doesn’t wear it around the house, and not often outside of it, either. Unless we’re going somewhere like a doctor’s office or similar, she just finds them too uncomfortable and is unable to relax or focus on anything else. As an inevitable side effect of this, she occasionally spots or stains her pants, though she’s never really been aware of this. Until now.

This is going to seem very odd, I realize. But it is from such seemingly insignificant moments that great strides come.

Beginning just yesterday, Jacquelynn became concerned with the fact that she was perceiving a bit of spotting/moisture in her pants after going to the restroom. She would clean herself properly, but would still feel little drops of “water” in her pants a moment later. As I said, these spots had been there all along, but now, a couple of months into the treatment protocol, the part of her brain which notices such things and assigns a level of priority to them has awakened. Lights are coming on in rooms that have been dark for quite some time, and that is very exciting indeed.

It took some talking to convince her that what she’s experiencing is quite normal for women staring down the barrel of their approaching sixtieth birthday. Wearing underwear and maybe a little bladder-pad would put her on even ground with a LOT of women her age.

When I explained that she had been essentially ignoring these things happening to her all along, she was a bit surprised, of course. She understood (after I explained) why I hadn’t pointed it out to her at the time, but was frankly at a loss as to why she’d not made note of them herself. So I elucidated for her as I did above for you. As she realized where I was going, yet more light came up behind her eyes.   As she begin to understand how significant a sign of her recovery this was, and as I teared up talking about it, her eyes also filled with tears.

Yes, we held each other and wept joyful tears, for a good three or four minutes, over pee.

And, she wants to expand her experience a little and trying to endure underwear again. Baby steps, of course, but still steps.

So, yeah. Good weekend.

 

Coming up soon, I’m going to update you all on how Dr. Ross altered Jacquelynn’s regimen following all the labs. Where was she weak, and where was she stronger than we maybe expected? How do those results allow us to focus her treatment further for her specific situation?   All that is coming later this week.   Stick around for that, please.

“…and Now For Something Completely Different, or “aahh…shi…”

First World Problems

In the wake of our teleconference with the doctor last weekend, it has been an eventful couple of days.

Let me preface this little anecdote by stating that I NEVER expected, no matter how long I live, to feel the way I did (and still do) about a little incident we had on Saturday. You’ll understand soon.

Saturday was a pretty nice day, all things considered. Nice conference with Dr. Ross (read The Kidney Correlation for more details), and nice weather to go for a couple of brisk walks as well. It was one of those walks that led to a new and wonderfully weird memory for me.

After we went for our first walk, immediately following the teleconference with the doctor, we split into our individual routines for a bit.   After helping Jacquelynn out of her jacket, she headed to the restroom and I retired upstairs to meditate and do a bit of writing. About half an hour or so later, Jacquelynn called for me, and I came running, as I always do. Toeing a new dark spot on the carpet, she said “I think this is coffee,” and asked my opinion. Now, some of you know that I’m colorblind, so not really knowing, but feeling an instant need to defend myself, I replied, “Doesn’t really look like it, but let me check.”

I’m the only one of us who drinks coffee, and I honestly didn’t remember even having an opportunity to spill where she was indicating as of yet that day.

So, I knelt down and touched the offending area. Not really wet, but a little cold, I still wasn’t sure, so I got down really close to smell it.

“It’s poop.”

“What?!”

“Yep. Poop.”   I looked immediately over to her shoes, and sure enough, there was poop on her right shoe, oozing from between the treads.

Being mostly interested in getting it all off the floor and preventing further spread, I helped her out of her shoes immediately. She was still a little incredulous, so I offered her the sole of her shoe and a quick sniff proved me right. Then it hit me; she’d already been upstairs to the master bath.   Which meant there was likely poop on the stairs, in the hallway, master bedroom and bath, and probably the laundry room and kitchen as well, as those were the first areas we entered when we returned from the walk. Awesome.   Not.

So, with a kind but firm rejoinder about where NOT to step, I set about with my trusty GP66 cleanser and microfiber towel. First addressing the obvious spots, then carefully retracing her steps. Oddly, I only found one more mark, but it was in my nose but good and for hours to come, I was smelling only poop, everywhere I went, so was convinced that I’d missed some. It wasn’t until after our next walk that I realized that it had been (mostly, anyway) in my head. Once I got out of the house for a while, it smelled nice and clean when I returned.

After I was finished cleaning, Jacquelynn came to me with another sheepish apology and was shocked to see me smiling happily. When she asked why all I could say was that it was so incredibly normal to have to clean up tracked-in dog poop that it had made me very happy. She offered me a confused smile, so I explained further; for so long it seems that every issue we have faced has such dire consequences. Honestly life-and-death stuff, day in and day out.   Doing something as unpleasantly pedestrian as cleaning dog shit out of a shoe and a few spots of carpet was the most normal I’d felt in ages. I seriously rejoiced in it.

Weird? Hell yeah.   Our lives have been eaten to death by weird. But NORMAL weird? I’ll take a shitload (pun very much intended, of course) of that any day.

Gratefully and with true joy.

The lead image is of a fake poop novelty toy.  Please do not take offense.

The Kidney Correlation

In March of this year, following Jacquelynn’s two back-to-back severe sepsis/kidney failure events and then her diagnosis of dementia but prior to the “official” conclusion of Alzheimer’s, I drew a personal conclusion linking her kidney issues to her dementia. In my opinion, the timetables were just too conveniently parallel, and the manner in which the cognitive effects of kidney failure resemble longer-term dementia symptoms were simply identical. I attempted to present these concepts to three different doctors (including her PCP) during her hospital stays and afterward only to meet with the hidebound mentality that is rampant in the mainstream medical community. Three conversations and three out-of-hand dismissals with educated, supposedly very intelligent physicians unwilling even to listen to or entertain the possibility of a correlation.

To formalize my thoughts and the chain-of-events that led to them, I wrote the following on 3/24/2017:

Jacquelynn Novak

Proposed relationship between “dementia” and kidney-related illness

Revised March 24, 2017

WHAT WE KNOW

1) Left kidney has been in decline for well over a year. Presumably much longer.

2) Kidney malfunction/infections have a profound cognitive impact. From elevated creatinine levels to blood toxicity, all contribute to states EASILY mistaken for dementia/Alzheimer’s.

3) I first made note of observable cognitive decline in mid-fall of 2015.

4) She has been ill in one way or another since fall of 2015; from kidney stones/infections to stomach viruses and sinus infections and every variation of the “common cold”, she hasn’t strung together 3 consecutive weeks of feeling well in all that time.

WHAT WE KNOW

REASONABLE ASSUMPTIONS

1) With the cumulative damage to the left kidney, its distress would almost inescapably be expressed in the body; elevated creatinine levels, susceptibility to infection, elevated white counts, and lowered immune response are all predictable, as is some level of cognitive impact.

2) This vulnerability and cognitive damage could be cumulative, as well, and would express as a mild form of sepsis, with reduced bladder control, frequent/chronic kidney infections, increasing confusion, difficulty expressing oneself, and reduced fine motor control, among many other manifestations, many of which are shared with a dementia diagnosis.

3) Her recent drastic weight loss could easily be attributable to the presence of the sickened left kidney, leaching nutrients from her food intake and expelling them rather than functioning properly.

POSSIBLE CONCLUSION

It is my assertion that the left kidney is largely or even solely responsible for all of her health problems of the last year-plus, even the “dementia” and it’s side effects. I believe that seeing a nephrologist at the earliest possible time is key to returning her to full health, and I think it likely that the removal of the poisonous remnant of the left kidney must be done with haste to make any healing possible.

____________________________________

Then, upon the conclusion of Jacquelynn’s final kidney surgery, I spoke to the urologist who performed the operation and presented this to him. To my shock, he not only conceded the possibility, but also confirmed that he himself had observed similarly concurrent events and had even seen some recovery of cognition upon resolution of the causative kidney issues. I’m not going to share this doctor’s name here, but his open mindedness and willingness to give me all the time I needed for what is usually a two-minute post-procedure conference (it stretched more than fifteen minutes into his very busy surgery schedule) were a breath of much-needed fresh air.

The Nephrologist we were eventually sent to by Jacquelynn’s (former) Primary Care Physician concluded that the kidney was no longer functioning and thus whatever threat it may have presented had passed. So, no surgery to remove it will be necessary (good thing, obviously), but it’s clearly done plenty of damage already.

All of this is to preface the conversation we had with Dr. Ross this morning.

As was widely suspected, her Reverse T3 (thyroid) is very low, as are her cortisol levels. Vitamin D remains low despite a daily 2000 IU dose since April. This led the doctor to make the switch from pills to drops for better absorption.

While the terminology did not translate to my hasty notes and I have not yet received the doctor’s transcription of the conversation (expected Monday), some of the test results clearly tie some of her symptoms to elevated kidney function. Dr. Ross hasn’t seen this before, and she is contacting Dr. Bredesen about it for input and advice. This may be totally new science, and we could truly be the first case officially relating the two.

It is my belief that this is very likely the case. Moreover, I believe that this is the reason Jacquelynn developed this illness. Her situation will could very well lead to paradigm-shifting science and save lives that would otherwise be cast aside and lost to the close-minded and casual “easy way out” diagnosis of Alzheimer’s and “we’ll-be-here-to-fight-for-you-till-the-end” bullshit we refused to accept seven months ago.

We will be beginning some hormone-replacement therapy as well as making some additions/alterations to the supplement schedule as that research moves forward. Results for mold (mycotoxicity) were well within normal ranges, removing one concern, and the house tested quite clean for mold levels as well. Of course, Dr. Ross will keep us in the loop re: her conversations with Dr. Bredesen in reference to the kidney toxicity questions.

Yes, we are moving in the right direction, and with a more focused treatment program evolving from the lab results (there are still a few out), that path will straighten and accelerate.

I will, of course, keep you in the loop as well.

 

 

 

Sensitivity’s Opposite

I learned a difficult lesson today, and one I definitely had coming.

Let me begin by admitting that I’ve never been a particularly patient person. I’ve gotten much better than I used to be, but I am definitely my father’s son when it comes to this issue.   I’ve been prone to sharp remarks, short snap, and sarcasm for most of my life, even violence on a handful of occasions (though never against a woman, of course), which is unacceptable under any circumstances.

As I said, though, I have gotten better. But still, I can very quickly stick my foot in my mouth. That generally wouldn’t be worthy of much more than a few moments embarrassment and an apology, but given our current situation, a careless, caustic slip can have rough consequences.

It was a simple slip, too, but one that I could and should have handled more intelligently. Just a little sensitivity would have spared a lot of tears and confusion and fifteen minutes trying to figure out where it went wrong. I finally figured exactly where we derailed, though, and it was 100% my fault. After a while, she understood that I hadn’t meant what I said the way it came out, and I promised to choose my words more carefully going forward. We benefited from the situation in the long run, but just a little tiny bit of my vaunted empathy could have prevented the entire thing.

Bottom line, don’t tell someone in this situation that they “can’t” have or do something. There’s no way that comes off as anything other than sharp and authoritative.   They’ll feel, justifiably, as if you’re treating them like a child. It’s so simple to choose a different word path, too. How about “That choice isn’t available to us because…”, or “We have to wait for that since…”? Gentility with reason. I like to think of myself as embodying that ideal, but obviously I have a very long way to go before that is ever likely to be true.

She deserves SO much better.

But, we learned from the experience. I learned a huge lesson, and she in turn promised to try to look beyond the words and into the intent behind them. She does know me well enough to know I don’t intend to be mean, but that in no way excuses it.

 

Tomorrow morning we finally have our teleconference with Dr. Ross.   It was supposed to be Tuesday afternoon, but she was late with other patients and it never happened, so she called me from the airport this afternoon, and we’re going to do it at 8:00 a.m. tomorrow. We’re extremely anxious to get the results of all the labs and to focus her treatment down to specific causative factors rather than the umbrella approach we’ve been using. As we have seen some progress like that, I’m hopeful of even greater and faster progress as we hone in on those factors unique to her case.

Stay tuned to this space for updates, hopefully as soon as tomorrow evening!

 

We WILL endure, and we will TRIUMPH.