The Long Winter

With an unsubstantial winter storm last week that failed to live up to predictions of nine inches of snow (the snow melted the moment it hit the ground), spring has been elusive here in the upper Midwest. Only today are seasonal temperatures arriving, though we did have a few tantalizing previews that flitted in and out again to make the wait more torturous.

The Discontent of My Winter

If you go by my posting, I pretty much fell off the edge of the world once the temperatures dropped.  In some ways, that’s how things have felt simply because what energy I’ve had has been used on more necessary things without an iota of excess available to do what anything desired – or fun.
Aging and Chronic Fatigue Syndrome do not mix well is something that has become very apparent this past year. Having to face that things will never improve and only get worse is something all of us must do as the decades begin to race by, however this is more dramatic when a chronic illness is involved. Motivation levels do not matter one whit as one can strongly want to do something and simply be unable too.

I’d hoped to be reporting on my winter speaker rebuilding project with photos of the finished product. That isn’t going to happed since things have moved at a snails pace. Movie reviewing has flat out been dropped thanks to “brain fog” intensifying with the increase in pain and fatigue.
Frustrating doesn’t begin to touch the feelings experienced the past year or so.
Hopefully something, anything, will go right in the near future. All that can be done at the moment is endure.

Relief

The molar is finally out thanks to a dentist much closer than the Twin Cities taking mercy upon me and doing the extraction yesterday at a discount. Fortunately, the removal went smoothly with the offending tooth coming out mostly intact leaving just one root behind that didn’t put up a fight when subsequently yanked out. While the socket hurts and the associated swelling is there, it is nothing compared to what it was like before. Being able to breathe properly while sleeping is a wonderful thing.

Since the tooth was right on a nerve, there was risk in the extraction doing nerve damage, however it was already manifesting symptoms along that line so it needed to be done. For the past week I’d experienced what can only be described as a mild paralysis along the left side of the throat into the bronchial area accompanied by a slight numbness in the left corner of my lips. The morning after the procedure revealed that breathing in general had been affected by the infection as well, much to my surprise.

Once this heals up, it will be time to try to get something done about a large cavity. While I hope I can get the clinic in Rochester to do that so it is covered by UCare, the missed appointment put me months back in the queue. At this rate, selling belongings or borrowing money may be necessary for a cash payment at a closer dentist.

Oh well, one problem at a time.

Pressure Points

Events haven’t been going terribly well for me  lately. Another tooth needs extracting and finding an oral surgeon who accepts the dental insurance provided by the state of Minnesota is proving to be difficult. It is bad enough that the only regular dental clinic that I could find for basic care is 40+ miles away in Rochester, but UCare Connect (Delta Dental Civic Smiles) isn’t being accepted by the places listed as accepting it online. If the support team doesn’t find me a place in 48 hours, I’ll be back to calling numbers which usually reveals they stopped accepting it within the past several years.

Adding to the woes is a missed checkup appointment this week due to Verizon delivering all my voice mails from July, August, and early September on the day before the appointment. Since I don’t get out much, the push queue seems to delay me getting them dramatically. In August, I received messages from May and July along with one from 2016!

Catching a Break

I wish this was a positive break, however it is not. The filling on the tooth that broke earlier this spring cracked while eating soft ice cream much to my ire. frustration, and baffled amazement. Since that filling was placed, other teeth have had smaller old resin fillings break as well so I’m wondering if resin is all its cracked up to be, no pun intended.

Sure enough, a little research online reveals them to be more prone to cracking and fracture then metal. Lovely.

Given the tooth location, I wonder if metal is even an option. While hoping extraction is not on the boards, it is only a matter of time before I become one of those people missing teeth up front. Medical Assistance simply doesn’t cover much anymore and dental work is incredibly expensive. $1400 for a cap is impossible for someone who is as far below the poverty line as I am.

With multiple teeth hurting to some degree, it is hard not to be pessimistic about the situation. I really miss the days local dentists accepted MA so that traveling for over an hour wasn’t adding to the difficulty. Not to mention it was a lot easier to get in for an appointment.

Sigh. Part of this is I’ve had to neglect my health during my father’s cancer battle and ensuing complications. Now that he’s doing much better, I’m falling apart. I don’t even have a regular doctor and will have to change healthcare systems it appears.

Something is going to give way soon, I fear.

Not Dead Yet

The title of the post is what I yell out to turkey vultures hopefully circling overhead whenever I notice them stalking me. Likewise, the blog is still going though I seem to have missed posting for an entire month again.

Believe it or not, the multiyear delayed Godzilla review has advanced slightly, in that I’ve got most of the screen captures ready for editing. Now if the notes taken on the Blu-ray release turn up real progress might be made.

Lots of little things and unusually low amounts of energy even for me have kept me from doing anything interesting since May. My sister’s family visited over the Independence Day weekend, so the back half of the week had me bed ridden most of the time.

Dad has done well with eating more solids along with liquid food that normally is pumped in. Apparently the Nestle kind is palatable enough to consume by mouth, or so he says. Dealing with a big change in food consumption has been challenging, since we’ve both forgotten how to cook over the last three years of his paralyzed stomach. With it working again, my solitary diet of rice and eggs/chicken can no longer be the norm.

As for me, the rest of July looks… challenging. August doesn’t look much better and I find myself dreading all the energy expenditures involved. More than likely I will have to disappoint someone or more than one if my energy levels don’t improve.

In the meantime, there may be some short posts coming up featuring some oddball acquisitions made over the past few months.

Overloaded

The past month and a half has been a blur of obligations, medical issues, and no energy to do much else so the blog has been neglected. No promises on increasing the frequencies of posting can be made until life gives me a few breaks. The Cubs could use some breaks right now too, as I type they are down 3-0 to the Yankees and it is the top of the first inning.

Like the baseball team is experiencing, it feels like life is hitting doubles against me. 5-0 now, the Bronx Bombers are clobbering starter Anderson.

Dealing with Dad’s health problems has been most of the drain though that will be letting up for awhile now that he’s successfully undergone multiple procedures to stretch his pyloric valve. Along with a change to Nexium (insurance hates that so the co-pay is large), his heartburn and reflux have vanished. Now to see if he can tolerate solid food again.

2017 and I’m Still Catching Up

While intentions to post were good, I failed to get anything written during the past month and a half. A great deal has happened that while not being earth shaking has been time consuming.

A few of the events in reverse chronological order:

I just purchased a new keyboard, a Motospeed Inflictor CK-104, to deal with perpetual cat hair and crumb problems. Being one of the newer mechanical keyboards with backlighting it has far easier access under the keys for cleaning. Double shot keycaps and nice Outemu blue switches made it a steal at $44 at Amazon.

So far I’ve only gamed on it without any serious typing. Writing this post is its baptism by fire…

Rambling Rather than Ranting

Once again, it has been more than a month since last posting. I wish this was due to being really busy having summer fun, however it is solely due to not being up to my normal levels of subhuman energy. Every day has been a tightrope walk managing health versus activity ever since spring arrived.

Adding to the misery has been chronic problems with the new silicone hydrogel contacts and trying to figure out just what is triggering allergic reactions that make me look like Christopher Lee as Dracula. What is mystifying is how one or the other eye acts up, but rarely both at the same time. Maybe a trip to an allergist is needed since I’ve used every kind of solution and cleaning regime out there.

A Buggy and Stormy Start of Summer

I haven’t been posting much due to ongoing issues with Dad’s health, my health, and no excess energy to speak of. My father ending up back in the hospital for two days of observation to start June which capped off a disastrous May when his removed gastric tube opening took too long to heal. A raging fever, loss of balance, and the return of the uncontrollable hiccups led to reopening that wound along with the hospital stay.

While he was in Gundersen Hospital, I had a visitor on the kitchen screen door that spooked an aquaintance delivering some electronics for me to wipe. The frightening creature turned out to be one of the large Polyphemus moths that live in the region. There is no need to fear being bitten by these gentle giants for they don’t even eat as adults. Sadly it causes them to have a short lifespan of a week or so due to starvation.

Another Infection

Back in February of 2013, I suffered from an e.coli infection that turned into an abscess. A recent bout of sinusitis has been brutal enough on its own and decided to morph into another abscess in the making in a peculiar turn of events. With my immune system abdicating all its responsibilities, the last few weeks have been miserable.

Currently on antibiotics for the throat closing sinus infection, so nothing new needs be proscribed. All that can be done is too apply hot compresses in the hopes of making the abscess form faster. Fun and games.

I still hope to post more often with actual content, yet life is not being very helpful toward that end.

Definitions Matter: IOM Report on ME/CFS

Being a sufferer of Chronic Fatigue Syndrome (CFS) means dealing with skeptical doctors, a lack of public awareness, and a very confusing diagnostic process. The last is a much bigger problem than even sufferers understand for it is the doctors being confused as well.

So I applaud the new diagnosis method proposed by the Institute of Medicine of the National Academies here in the United States. While I haven’t read the full report yet, the outlines and video presentation depict a much more streamlined (and dare I say it, more accurate) list of symptoms for diagnosis.

Quoting from the Key Facts PDF:

There are five main symptoms of ME/CFS:

1. Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. Cognitive impairment; and
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

The first three are mandatory and one of the latter two is needed to fulfill the criteria for diagnosis.

I suffer harshly from the first four and haven’t been tested for orthostatic intolerance. Lately, number four has been particularly bad, hence my not posting much. The last few days have been especially challenging making coherent sentences a challenge even when speaking. Today is better, thankfully.

Also in the report is a proposal to rename the disease to Systemic Exertion Intolerance Disease or SEID. Doesn’t roll off the tip of the tongue, does it? However, it is bang on what the illness is really about and, most importantly, replaces “syndrome” with “disease” which is important in the medical world.

Note that this report has nothing on treatment and is confined to diagnostics for doctors and researchers, so please don’t get your hopes up on a treatment being developed quickly or even at all. What this report does is add legitimacy to the illness which is vital for extensive research to be done like Stanford’s findings last year of physical abnormalities in CFS patients’ brains.

After over 25 years of having this miserable illness, I’d given up any hope of advancement in any way or form from the medical community. This may be more than a glimmer.

Laboring Along

It’s been a week or so since I last posted, nearly two weeks now that I look at it. Things have been tiring with not as much drama as July. Currently suffering from a cold or the ilk, so the post will not be terribly lengthy.

Dad has been losing weight rather than gaining or stabilizing, which led to two appointments this week. One was an expected follow up to see how his gastric decompression tube was doing – no problems there. The second was with a dietician to review the weight loss issue.

Second to Last

Normally the three words “second to last” has a negative connotation ameliorated to a mild mercy by simply not being “last.” Yet there are exceptions to that wretched feeling and that’s when the words are used to describe being near the end of a series of trials. That’s where Dad is after his second to last chemotherapy infusion yesterday.

Make no mistake about it, he’s still miserable and terribly, terribly weak. Side effects from antibiotics have made things even more challenging than before to the point of his discontinuing them two days before the end of the course. I’m not happy with that, but as he slowly gets stronger he gets harder to deal with. It’s ironic that when he’s at his lowest he’s the easiest to deal with when caring for him at home.

Some progress has been made in that he’s gained a couple of pounds despite the side effects, his white and red blood cell counts have improved into acceptable ranges, and he’s more ambulatory now. My father has walked to his appointments at the clinic rather than having to be wheeled everywhere like earlier in the month. After such a steep decline, any regaining of lost ground is most welcome.

Going Backwards

Update: 

Dad is home and we await results of a chest x-ray and the ultrasound. The EKG wasn't a perfect reading, but didn't reveal anything significant from what I can decode.

We're back to feeding at a lower rate per hour to see how that goes.

Then there was a big discovery once at home that I made. Tessalon Perle is the medication prescribed to quell the hiccups. On the prescription, it says to take 1/2 or 1 pills up to 3 a day as needed. Guess what pill should never, ever be cut or ground up?

The known side effects at WebMD and Wikipedia read like a check list of many of Dad's symptoms that currently prevent him from drinking or swallowing anything. So that one will be out of the rotation to see if certain condition improve -- especially since it has failed to suppress the hiccups the last few days.

As a side note, my father's voice is getting a little better and had been up until yesterday. After the transfusion, it seems to be slightly stronger. He's been anemic due to the chemo, so no wonder he's been weak.

Update 2:

X-ray results show the feeding tube is where it is supposed to be. Unfortunately, it also revealed a mild case of pneumonia. Going to have to pick up antibiotics tomorrow.

Original post:

Dad is in terrible shape and the scheduled chemotherapy has been canceled. That doesn't mean we are free from Gundersen Clinic today.  At the moment, my father is receiving a blood transfusion due to a low red blood cell count and a host of debilitating symptoms.

Prior to that an EKG and ultrasound tests of his heart were done to assess whether there is a problem there. Results are pending, so the waiting game has returned.

The deterioration has become alarming. Almost as alarming as Dad's appearance. Doctors, nurse, and staff who've seen him before get such a look on their faces -- I'd describe it as a mix of shock and dismay.

Between his appearance and the hiccup induced weird sounds he makes, he had the other cancer patients looking very uncomfortable in the waiting area. My father was probably a reminder of how bad things could get.

He's as weak as a newborn kitten and has to have help dressing himself. This is a radical downturn after a promising Tuesday where he overexerted himself. Not that he really did much, but going up and down the stairs was a bit too much. Yesterday I moved his PC downstairs to reduce temptation.

Though last night's feeding through the tube failed at the halfway point, we will continue the regimen. No choice in the matter since he's become unable to orally ingest anything without choking. Everything is like pulling teeth, it seems.

Somehow I've managed to keep from falling apart health wise. The last two weeks have been brutal and flirtations with lower respiratory problems have shut me down at times. Since Dad has become such a handful, the realization that there can be no more time or efforts devoted to my health or interests has become something that cannot be ignored.

Last night illustrated that when I played a video game and couldn't figure out why my father was trying to slam shut the bathroom door repeatedly. Because his behavior has been erratic, my assumption was that he was having trouble with the humidity swollen door.

Then he showed up at the doorway to my room trying to shout with his fried vocal chords. He'd somehow managed to unplug the pump from the feeding tube and had been trying to signal me for help. Apparently part of it involved thumping SOS in Morse code.

So no more gaming, watching movies, or listening to music will be possible until he gets much stronger. If he does, the latest setbacks make me think that end game preparations need to begin in earnest. No matter what the outcome, contingency plans need to be made.

More later as the situation develops.

Raggedy Man

It has nearly been a week since my father’s third chemotherapy session and I wish I could report he is energetic. having been hospitalized for a week burned up what reserves he still had leaving him completely worn down. Hiccups returned after the session and he’s been fairly miserable since. Sleeping is erratic, and when combined with his refusal to deal with being ill, has caused him to really feel terrible the last few days.

Since his hair is slowly falling out, Dad has gotten very raggedy looking. Being unrested and grouchy (mainly to do with the full liquid diet) has made him look even worse. There’s no fooling people on how you are doing when the veins on your head look like the stand out several inches.

He’s going to have to accept his inability to do things or drive himself straight into the grave out of pure stubbornness. It has made me ponder the fact that stubbornness is just another name for stupidity. Rest is what he needs even if he doesn’t want to.

Meanwhile, I hit the wall last Thursday during the chemo and haven’t had energy to spare. I’m staggering through everything I have to do. That’s when I’m able to stagger at all – most of yesterday I spent in bed.

It isn’t uncommon for the mid to late cycles in cancer treatment to be the toughest periods for the patient, so this wasn’t unexpected. Expecting is far different from dealing with it once it arrives, though. Fortunately, this is a quiet week with few demands which means it is perfect for healing rest.

At least nothing exciting is going on.

Hurry Up… and Wait

Probably the most aggravating thing about serious illness is the uncertainty involved. One finds themselves waiting for test results, the doctor to explain things, the medication to arrive, and a many other aspects of medical care. Making it worse is the tantalizing prospect of a solution, progress, or even hope of going home from the hospital.

The latter is the current situation. Step by step Dad has been slowly moved up to a liquids only diet with talk of being release this afternoon. However, low hemoglobin counts are making this iffier. Once again we have hurried up only to wait.

Yesterday was a day of cleaning here at the Boonedocks. The kitchen was focused on to sterilize anything that could contaminate food. Thanks to the help of the Koch family, this became possible without completely destroying my health in the process. That refrigerator alone was a thing of nightmares that I dare not recount in detail for fear of upsetting those of a sensitive temperament.

I still need to clean the microwave, I just realized. Ah well.

Last night was when I started to hit the wall and so careful attention to efforts exerted is in order. Getting an infection going would not be good for being around my father during this stage of the game. Between traveling to Gunderson, sporadic cleaning, and running errands there isn’t much left of me.

With luck, Dad will be brought home later today by my sister, which will save a lot of my meager funds for gasoline that have to somehow stretch to April 3rd when my next Social Security deposit arrives. Also of concern is keeping the house heated. Wood pellets aren’t cheap or plentiful while the LP tank is getting low. Meanwhile winter weather has returned and will be around through most of the coming week.

So please keep those prayers and wishes coming, we need them. Thank you to all who have been doing that and especially those who’ve helped out in person. It is all greatly appreciated.

Spinning Wheels

The results of the PET scan revealed my father’s lymphoma no longer can be found, which means the tumor is gone and cannot be blocking his stomach. So that’s great news. However, they doctors still don’t know why his digestive system isn’t moving things along.

Once again, it is a waiting game. I headed home to prepare the house in case he’s coming back today or tomorrow, but haven’t managed to get much done. Energy levels start out low for me and they are even lower now making everything difficult to do.

Heading home last night was a bad experience despite getting good news on the cancer part of my father’s woes. Out on Houston County 4, I noticed large amounts of deer in the fields due to the snow cover melting away. At night, I rarely exceed 45 mph because the large vermin are very active thanks to a huge population. It still didn’t keep me from hitting one.

Draining Times

As I start typing this post, my father is being bombarded by energy particles in a metal shell. The PET scan is to determine whether the tumor in his stomach has changed size one way or another. The hopes were that it would be mostly gone after the second round of chemotherapy.

Since nothing has been exiting his stomach in a downward direction, there are a lot of concerns at the moment. Doctors have been puzzling over the case and many a theory broached, yet this is the test that will shed the most light on just what is happening. Surgery may be required if the RCHOP regimen has failed.

Meanwhile, Dad is not looking good today. He's as gray as his hair due to a lack of sleep and dramatic loss of weight. Fortunately, my sister is here to assist in looking after him. My immune system has shown signs of wanting to go on strike, so I spent yesterday at home resting.

It has been especially difficult for my father the last 48 hours thanks to having a tube down his nose going to his stomach. Since nothing is making its way through his GI system, constant pumping of his stomach is required. This has been a miserable experience resulting in his not sleeping.

Hopefully they will give him something to knock him out tonight.

Back to the home front, the house needs cleaning and sterilizing -- no exaggeration. This morning the long process began and I hope to get more done so Dad can come home to a less infection causing environment. Cat litter boxes have been cleaned, initial stabs at saving vomit stained clothing and rugs tried, and most organic refuse disposed of. Next is cleaning out the refrigerator including a too old duck. The latter will have to be buried somewhere where the soil is sufficiently thawed.

All of this is presuming father will be coming home. The possibility he won't make it increases the longer things stretch on. That might upset some reading this, but being a true adult means facing reality head on preferably without flinching.

All will be dealt with as it comes, no matter how messy.

Dad has a large number of people praying for him and a top notch hospital taking care of him. That's something to be grateful for.

Endurance Run

Time to report about how my father is doing and just a few minutes before this post was started I had to perform the Heimlich maneuver on him when a cyclovir pill tried to kill him. No, this isn’t an attempt to be humorous.

Fortunately for him, I was in the bathroom next to the kitchen when I heard him choking and found him doubled over. Concerned that his stomach might have perforated, I quickly ascertained that it was simple choking and asked him if he needed me to Heimlich him. A nod was all I needed and I very carefully made an escalating trio of attempts very conscious of the dangers of rupturing the cancer stricken stomach. The third time the pill popped out and he was able to breathe again.

After that, I made sure he was okay and that there was no pain in the abdomen. I’ll be checking periodically, but the force used was carefully measured so I don’t expect complications. Heck of a way to end the day, yet it is consistent with how difficult the entire week has been.