worrisome and worisomer

Well, surprise, surprise: the system moved along quickly enough Thursday that I had an O2 concentrator by bedside Thursday afternoon. And, we had also picked up the sleeping meds. So, given that today is Saturday, I have had 2 nights with O2 and with sleep meds.

The Good, The Bad, The Ugly. The good clearly relates to being able pretty much to sleep in any position without O2 starvation, That has been nice. I have even been able to lower my bed out of hospital elevations. I put quite a few hours on  the machine during the day  since the bod was hungry for it, and by then, I was nearly narcoleptic. The bad is that it is another set of tubes to constantly adjust. And the extra weight of these tubes rapidly detaches the seal on my CPAP. The Ugly is the truth: I have not instantly been able to sleep 8 hours at a time. Rather, my sleep is still broken into the segments that I have mentioned before. Usually 4 hours give or take and then some fussing with regard comfort and switching among my sleep stations. Yeah, but what about the sleep meds--trazodone--50 mg tabs--(I am starting with 1/2s)? Well, at first night time perception seemed a little affected, but there was no immediate drop off the cliff into instantly deep sleep. Since I've never experienced any sleep meds ever, maybe I was expecting an effect that doesn't exist. It seemed that going to sleep was similar to before, with maybe less anxiety. But when I got up the next day, there was a huge, quasi-hangover feeling of dragging around an elephant. That experience was not replicated last night, but all else was. So, in sum, there are improvements--nothing dramatic. Going to sleep and staying asleep are less problematic. But last night was more similar than not to prior times: I had to move among my sleep stations to seek comfort.

(Yes, purists, I know we input two variables at once (O2 + trazodone. So, sue me.)

Other Troublesome Crap. All of a sudden I've developed edema in my feet and ankles and most of my legs, I attributed that initially to sleeping in the recliner where in one position the feet are on the floor. I thought it would retreat. It has not. Of course inflammation is the body's response to injury in general. I've had some in the past couple years coincident with being on my feet--long walks for example where I feel stressed at the end. But it has always resolved before now.  I have had little appetite since the current crisis started. Truly, I cannot finish a regular portion of anything. I am also not drinking any alcohol. This has been coming on for a couple weeks and I have gone with it in the interest of dropping some weight. And, I have. Imagine my surprise when I stepped on the scale the other day to see that I have gained about 12 lbs! Clearly, it is water. I don't have the urge to whiz. I worry about heart function here, since my youngest brother (morbidly obese) died at 56 yr of consumptive heart. I wonder which doc should attend. Probably cardio guy. Except that my appointment with him is two weeks away. Time to find out.

Miscellanous. I found out this morning that my home oximeter records continuously, so if I am recording I can go to sleep and recheck it a minute or so later without taking it off and putting it back on. I put it on this morning since I thought I detected tachycardia. I did! At least high HR of 160. I did some relaxation mantras and the next reading was normal. That was repeated several times. It was right at the time my overnight oximetry chart showed it to be, 4 a.m. I think this is also the period of greatest HR variability (chicken v egg) and other functions from my Holter Monitor results.

onward (and upward?)

Perhaps I got a wee bit overconfident that my condition was improved enough that we didn't need to run back into Walgreen's to pick up my sleep meds. We decided, since the sleep doc wants to examine the memory chip in my old CPAP, to pick up the meds in the morning when we need to drop off the chip at the Budge Clinic. Well, check the time stamp on this post to see how good a decision that was!

Here are some reasons in my thinking. Yesterday afternoon, I had a wonderful nap. I slipped under real easily and stayed that way for 2 hours. I wasn't too worried about impacting last night's sleep since the sleep bank is very low. The night before, I tried a variety of things to help recondition the sleep environment. I used some bluetooth phones to pipe in a streamable Long Beach jazz station. One never quite knows how effective that is, if one hears quite a bit of music all night--which I did--but it has a calming effect and might help countercondition the O2 starvation reflex. (Or at least distract from it.) I moved among 3 related environments: my bedside recliner, my bed, hugely elevated, and the bedside recliner while listening to music and/or reading. I thought that this procedure produced slightly better sleep. At least I could continuously monitor where I was most comfortable and have a planned next move. Entering into sleep was marked by dropping the book in my lap. And it started well last night. I began in bed, couldn't get comfortable with the head raised so high, and gradually brought the bed to horizontal, where--surprise, surprise--I could get enough O2 on my side to lie there for maybe 30 min. In the recliner, I noticed much less music, and the book was repeatedly dropped in my lap. I made it through 5.5 hrs this way. And while that is not great shakes in the overall scheme of things, it is, given my recent history. While I am short in the last bout--and I can feel that in my head--with the nap yesterday afternoon, I am close to 8 hrs for the prior 24 hours. (And, I can nap this morning,)

The sleep doc made me a copy of my overnight oximetry report filling in important details, for example, I am less than 89% O2 saturation for over 60% of the night. He will be ordering supplemental O2 (I can see that my internist just wanted the sleep guy to deal with all of this and so didn't report details.) I had one period of near 15 min in O2 saturation of 88%. All of this makes me eligible for supplemental O2. So that should help sleep and make loss of neurons less likely. I had a fair number of desaturation events, defined as a 4% loss in saturation. I had 14 of these that were over 3 min duration and a total of 310! This appears to relate to the variability in my heart rate. As hr decreases O2 saturation also decreases. I think that supplemental O2 will decrease this variability.

Finally, the sleep doc taught me that there are 2 kinds of apneas: those caused by physical obstruction--the collapse of the soft palette while breathing and a CNS caused one. In the latter the brain continuously monitors/regulates blood PH. It sends out hormones (?) to do so. But if one hyperventilates in order to get O2 back to the status quo, it rapidly changes blood PH. It can make too big a change in the blood chemistry leading to another apnea owing to the hyperventilation. In other words an apnea caused by the CNS. Not a great explanation but it is indicative of the sleep deprivation I am under, Point: there are CPAP machines made to deal with both kinds of apnea. The machine I have now deals only with obstructive apnea, So there are more tools! That is satisfying.

Add to that that tonight we will go to bed tonight truly medicated--more on that in another post--and I end this one optimistically!

pending as a way of life

Here's a brief one: still getting no satisfaction in my sleep efforts. Actually was frustrated enough to talk with the on-call doc yesterday (Sunday!) at Budge Clinic. Decision not to go the ER was reinforced. They would do a full workup with the conclusion that they could do nothing for me there, and schedule me with the sleep people with whom I am already scheduled. My call may expedite my position in line for services. IHC apparently has a new sleep doc--that's all he will do--and everyone thinks he is some kinda good. Hope!

The on-call doc suggested popping 25 mg of benedryl upon bedtime. I recall from chemo, that a bag of benedryl would put me out for an hour. I tried it. It put the struggle for sleep into slo-mo and at the end of 2 hours its effects were gone. Then it was another night of up and down until I went out for a nap after breakfast. I feel somewhat refreshed.

So now, we wait. And we try to make sense of what is happening. More benedryl tonight.

not so much

I don't know when I last slept. Certainly not this past night. I have been in the vicious cycle all night. To wit: I start to fall asleep, run short of O2---or perceive that I do---and jerk awake, usually breathing rapidly to recover equilibrium. This repeats over and over again, until exhausted, I arise and try to do something with the time--read a NYer article, post a blog. I get some nominal rest doing this but my psyche gets scrambled when the brain doesn't have its usual repair time. I came close several times last night  to waking Jan, and driving to the ER. But I feel foolish showing up there saying, "I can't sleep". This was exactly the situation a couple weeks ago in Jackson Hole for our aborted Mother's Day trip. It was solved by going to lower elevation, i.e., returning home. But I'm already home, so what do I do now to solve this?

I did take a huff on a new inhaler--cortisone-based--but it is long acting. And, in any case, my sinuses and lungs feel wide open. It apparently is that my lungs are not big enough now to do the job. The huff seemed to smooth things out a little.

Pre-cursors? Well, yesterday a.m. I got up and got a haircut and then hurried home to hook up the boat and do the first day of fishing in Idaho. There were numerous obstacles: I had to get a tire repaired the day before, which also meant up early and sitting in the tire shop while they located the screw that was in the driver's side rear tire. We proceeded to Idaho where the boat was scrutinized for quagga mussels twice. Once at the border, where I had to buy an invasive species sticker ($22) and then again at the lake where it cost an additional $20 to launch.The people at the lake couldn't get their card reader to work with their wifi hotspot. We felt we were on borrowed time as a storm was predicted to come in with heavy winds later that afternoon. There we were wasting time on the dock while the wind increased. Then the damn boat wouldn't start. Looks like my battery was a failure after all. We had to jump the batteries for the electric motor to get enough juice to power up the engine. Finally we fished with the wind for about 2.5 hrs--our usual sojourn there. I caught one nice bass, but it was tough sledding. Couldn't get the lures down because of the wind. Had trouble trailering the boat given the wind. Then when we got home I had a devil of a time parking my boat in the garage. I've only been doing it for years, but yesterday it gave me fits. By the time I walked into the house I could barely put one leg in front of the other. Not good. Can I no longer engage in this level of daily activity normally? I immediately tried to get a nap, but failed. In  fact I was dragging through out supper and the evening. Why then couldn't I get to sleep at the regular time?

I tried to engage the IHC site for my lab tests before I started this post, but it seems dead. Perhaps, it keeps doctor's hours? Or maybe this early is the time they do site maintenance. So I still do not know the outcomes of my overnight oximetry trial of last week. Where over all does it show my O2 saturation during sleep? I sampled a number of measures last night--when just falling into the cycle, after the panic breathing, etc. Unsurprisingly, after panic, my O2 saturation is off-the-charts good: mid to high 90s. But this is also a time for widely variable pulse rates. I got one reading last night of 150! Can you say possible SVT? On the other end when just entering the cycle, I got several readings in the mid-80%s and one that was 77%. Not good. I don't know if these extremes are a function of the vicious cycle I am in, or if they are common. The overnight trial would certainly shed some light.

The absence of that data also figured in my not hieing off to the ER quite so quickly. So, if I can make it to sun up, I will pester my doc's office to get some resolution. I still have a sneaking hunch that some O2 from an O2 concentrator might solve this problem. It may be very expensive to do this without the help of Medicare. (A colleague who has been using such a device for years, suggests one rents them. Even with Medicare supplementing it, it still costs him $23 per month.

Time for resolution,,,

better

Okay, admittedly, I was down during that last post. I don't consider the pondering of a future demise strict evidence of depression, more a contemplation of reality. But, I was down nevertheless.

My sleeping has improved this week, and, of course, with it, my outlook. I've had a couple of good trumpet sessions. There is hangover now of playing on consecutive days. I am thinking long and hard about not participating in the Celebrate America show in Sept which demands being on the bandstand virtually for a week of nights. There is scant recovery between shows. This morning I have a pleasant fatigue from playing a couple hours last night with the guys. It was fun. But even after a pretty good 8 hours of sleep I feel I need some more. (Of course, I will just take it--the beauty of retirement!) I believe I can still do Jazz Kicks in the fall. It just demands a single rehearsal per week ending with a single concert.

We are moving forward with simplification in our lives, if only in fits and starts. Since I never play my (600!) CDs anymore--replaced by satellite radio--I have catalogued them, boxed them, and contacted the university in re an inkind donation of them to the Music Department where they may help the Jazz Studies program and its students. We have some guys skim-coating the stucco where it has gotten cracked, refinishing the deck and some out door furniture and repairing fencing. The place is beginning to look good again. 

This should sound a bit more up....because it is!

Oh, yes: we are going to do some overnight oximetry to determine what my oxygen saturation is during sleep. If it is low, then I will qualify for O2 in the home and maybe to travel with. Solving problems, one at a time...

a few depressing thoughts

Last night I had the strangest dream....someone remind me of where that comes from. I dreamt about someone being trapped in an underground bunker where the air could be strictly controlled-- that is, if the controller was mindful of his duties--in which it was frequently difficult to breathe, because he wasn't so mindful. During this dream, of course, I awakened somewhat to find myself working diligently, but not altogether successfully, to get a full breath. Becoming more and more mindful of the problem, I further awakened until--too late--there I was wide awake at 4 am. Ergo, this post.

I may be falling back into a pattern of sleep that I was frequently in during my pneumonias: A successful first four hours or so--probably not quite enough to get into the deepest phase of sleep--followed by a morning nap and an afternoon nap. This pattern seems to emerge in response to a general increase in wheeziness during the day either from exertion from trumpet playing, walking, or such or from crap in the air, or from allergens. I have worried of late of a potential upper respiratory infection starting up. Yet there is scant evidence of such other than this symptom. (In turn, the symptom may be only a result of my current state of 44% lung capacity.)

And, horror of horrors, I have begun to contemplate something that truly frightens me and ties the foregoing together. Though no one has ventured as much, I wonder whether my restricted lungs will progressively become more restricted. My internist has suggested a reason for this latest insult: destruction of the phrenic nerve or others leading to the phrenic nerve by my chemotherapy. While my pulmonologist in Phoenix stated that the R-CHOP + V chemicals are not indicated in lung pathology in the literature (while other poisons used in chemo apparently are), he didn't advise on other possibilities, like a pathway to muscle control of the diaphragm. Unfortunately this latest explanation makes considerable sense for this condition to have popped up, as it were, seemingly out of nowhere. Is this just a continuing insult of chemo? 

Is it progressive? I ask this question with foreboding. One outcome of my recent physical was to find that I now lack reflexes in both ankles. Is my neuropathy increasing? I don't sense that it is. It hovers there in the background, a thrumming presence in my extremities. I detect no changes in it. But is my chemo history producing new insults? And will it continue to do so?

I am reminded of my good friend, Richard Powers, diagnosed at 80+ years of age with ALS. He died, at his own hand, with dignity, Must I contemplate a similar demise? No iron lung for me. That I know.

Perhaps this afternoon, I will wonder why I ever wrote this.....

don't go there!

Enough has happened since I last posted that I felt an update might be informative.

1. Meeting with Internist on Cinqo de Mayo: I am in fine shape for my age, except for everything that is wrong with me. I learned a few new things. First, I have no ankle reflexes in either ankle; second, he cannot hear the  lower lobes of my lungs filling (because they aren't!). Validation of a couple items on my list (see  prior post summary). Lisonoprill is probably contraindicated since it may increase the frequency of pre-syncopal events. So the bp will get no help at this time of a pharma nature. Thanks, and see you in three months.

2. Mother's Day Weekend: Per usual, we headed to Jackson Hole WY for our traditional Mother's Day at Signal Mountain Lodge. Everything went as planned for a while. I drove the 3+ hours uneventfully. We had a marvelous dinner in town--lamb racks at The Blue Lion and headed to Signal (7k ft above sea level). In our room we went to bed and I couldn't get enough O2 to get to sleep. I labored at it from 10 pm until 2 am when I thought I would go crazy. My body would repeatedly sink into sleep only to immediately jerk me awake while I gasped for more air. I was unsteady on my feet. Surprisingly, this wasn't a problem walking the short distances to get from restaurant to car and to unpack at the Lodge. We packed up and were on the road back to Logan within the hour. There, sleeping was cake and we all imbibed for most of the morning and again in the afternoon. And, happy to report, last night was perfect: sleep from roughly 10-2, a short whiz, and sleep from 2-6. 

Big lesson for me here: If I am to continue unfettered vacation activities that involve high elevations I am going to have to get some supplemental O2 and see if that helps. Otherwise, it's vacations at the seaside!

Happy Mother's Day to you all!

in preparation for cinco de Mayo...

In two days,  May 5, I meet with my internist for a semi-annual physical, I haven't seen him since before leaving for the winter, last year. Since we hear a great deal these days about taking our health care into our own hands I thought I would prepare a precis of where my condition is currently and where it might be necessary to tweak it. This I will use to guide the discussion during the physical. So, in sort of chronological order, here is a description of the condition my condition is in aka the wreck of the hesperus (with apologies to Longfellow).
1. Low back/spinal injury: Current manifestation in worn-out knees and weak legs. To do: nada except occasional spinal cortisone shot. Note: exercise does not alleviate this weakness. 
2. Heart: stress-induced SVT episodes led to beta blocker; recently removed given pausing in the ventricles. Outcome: higher, more variable hr, higher bp (Mean = 143/94), fewer ventricle pauses, occasional SVT; occasional pre-syncope, sensitivity to CNS stimulants like caffeine, sugar. To do: manage higher bp with diet and exercise. The other stuff?? Ditto?
3. Acalasia: managed by omeprazole and slight elevation in sleep posture. To do: nada
4. Chronic, obstructive sleep apnea:  Use of CPAP machine quite satisfactory, until lately.  Lately, pneumonia has led to a vicious cycle of anxiety upon attempting to sleep and becoming O2 deprived. Conditioning has led to anxiety pre-sleep. Managing this by Melatonin at bedtime and calming activities pre-sleep. To do: Wean off Melatonin??
5. Mantle cell lymphoma: treated by chemo with RCHOP + V. By Aug - Oct 2016 the remission length will qualify for "cure" status in that field. (Yeah, right.). Outcomes: clear remission of symptoms. Side effect: neuropathy in feet and hands making it difficult to walk without pain and effort.. Exercise does not improve this. Side effect: lowered immune system function, seen in several bouts of pneumonia over the past 18 months, congruent or subsequent to exercise. 
6. Restricted lungs: one diaphragm muscle overgrown on ribs doesn't appear functional leading to 44% lung capacity. This condition appears to relate to several of those above, namely: breathing! and sleep! and exercise! Doesn't appear to relate immediately to playing trumpet, except in phrasing, nor to aerobic exercise. Those activities appear to lead to later problems, like pneumonia, bronchial spasms.

General Outcomes:
1. Get emergency inhaler, cortisone-based for short-action relief of shortness of breath/bronchial spasms. Long-term inhaler (symbicort) not necessary at this time. Albuteral inhaler contraindicated
2. Begin systematic program of weight loss. Goal = long-term management of bp. Goal = reduction of 10% body weight = 24 lb (based on today's weight of 238.7 lb) = 215 lb. 
3. Monitor occurrences of SVT episodes and pre-syncopal events.  There has only been one noticeable SVT episode (probably produced by social stimulation combined with a couple ounces of neat whiskey). It ceased upon brief self instruction. Pre-syncopal events occur every few days. They seem orthostatic = happening while sitting. (Two in car are worrisome.) Currently managed by putting head down, or breathing rapidly, or coughing.
Anything medical for this???

General Feelings
1. I have felt "off" (funny in the head) since dc'ing the beta blocker. I speed real easily.
2. I am really easily fatigued. Now more than ever.

That's it. Maybe all this is, is: getting old and not getting over it!

More when I see what the doc thinks about all of this....