Margo's Back is Back in Trouble

MRI view of Margo's neck (cervical) and upper back.  The bones around the central spinal cord are pressing in on the nerves and giving her a great deal of pain.  She had the lower back fixed in early December, and now this area is next for repairs.  The pain is in her right back shoulder and neck with some in the right leg.  Nerves do not like to be pressed against by unruly back bones and disks.  Can you see 4 -5 narrow (stenosis) areas?   One solution is to take great amounts of pain killers and move to a wheel chair and another is to try to have the surgeon remove the pressure.  Margo is in favor of the surgery first before giving up walking.

Two months ago, Margo, my wife, had lower back surgery.  It improved the problem, but she still had pain, but some of it had shifted to her upper back--right shoulder and neck area with still some in her leg.  

So, today she had an MRI on the upper back and found that it too was having severe problems with narrowing the spine and squishing the spinal cord.  The MRI doctor, who looked at the image, called her on the way back home to tell her that she needed to see a neurologist and neurological surgeon immediately.  

There is danger of a fall or other injury to the back of causing paralysis as the bad part of the spine might crush or cut the spinal cord.  She is to be very careful and do nothing physical except walk very carefully until she talks to the next doctor tomorrow.  

The lower back is repaired and doing better, now the neck/upper part is in trouble.  I imagine after getting that fixed, the middle will be next.  She thought the lower back operation was not successful, because, although her leg pain is less,  she still has it.  It appears the stenosis up near the neck may be causing some of that too.  All of the nerves from toes to shoulders all run up the spinal cord, and pressing anywhere on it (top or bottom) can cause pain from top to bottom.  

The doctor explained that Margo, having had birth trauma that damaged not only her neurological system, but broke her hips and caused other spinal damage, it is all catching up with her.  Just trying to walk with the CP causes unusual wear and tear on everything.  Add to that, working many years as a nursing aide with all the physical problems that added, her back has worn out.  

However, surgeons are always optimistic that they can cut, repair, replace and glue, nail, screw and weld in new parts to fix things up. So we are hopeful Mayo will again help bring Margo's back. 

Or could it be that Scott stepped on too many cracks?

I head in tomorrow to see the eye doctor.  My eyes were messed up a little from the prednisone taken in high doses for a year and I have some trouble with seeing the writing on the wall.  

It reminds me when I was in the 7th grade, just before I got my first pair of glasses.  My teacher asked me "Why are you so mean looking nowadays?"  I didn't realize it, but I was squinting, trying to see the blackboard.  In those days, there was an eye chart and the teacher had me try to read it and I couldn't, so she sent a note home to have me see the eye doctor. 

I had the eye test, and I was quite nearsighted.  A few weeks later, I went back and got my first pair of glasses.  It was November, and the first thing I noticed when we left the doctor's office was the amazing complexity of tree branches.  There were limbs, branches, twigs and tiny twigs, all visible.  It was remarkable!

When I was in college, I liked a girl named Ann, a bright, interesting and friendly young woman, who seemed to tolerate my lunching with her.  She usually took off her glasses when I came to join her.  
    "You are vain," I kidded her, "you take off your glasses when I come so you look better."   
   She smiled and said "No, you look better when I take off my glasses."

An update:  my somewhat fuzzy vision is mostly due to cataracts and at some time when they get bad enough, I can have them removed.  However, the doctor said that my vision--at 20-25 (perfect is 20-20) is "not too bad."  

So, I cancelled my appointment with the seeing-eye dog people and am ordering a slightly different pair of glasses from my favorite cheap source -- ZenniOptical where I can buy a pair of single vision specs for $15 with all the coatings and frames I like, and a set of bifocals for under $60.  Heck of a deal if you don't mind adjusting the nose pads yourself.  When my Myasthenia Gravis was active, I bought half dozen pairs of varying types --reading, computer, distance only and bifocal, spending an average of $30 each.  

A Two Year Lube, Fluid Check and Battery Exam

Spent Thursday at the clinic getting some tests. Hadn't been in for 2 years, and everything is wonderful except my weight, blood pressure, thyroid level, heart rhythm, 1/3 shrinkage in my back vertebra from osteoporosis, and a few dozen other minor things. 

The test results would bother me a lot more except I feel fine.  I wouldn't have gone in at all, except my ongoing prescriptions won't get refilled without a few status tests to see if I need more, less, or can idle along at the current levels.  Like my father, I go see a doctor when I don't feel fine and only after a few weeks of not feeling fine.  And right now I feel fine!

The doctor thought my feeling fine was likely early dementia, and if I started feeling better than fine, I should be tested.  

 My body is being donated to the Mayo medical school, so a couple of med students stopped over to check me out and left rubbing their hands with eager anticipation!  This gift of what is left of me meets my frugality principle:  I get someone to haul my body in the back of the pickup to the Mayo loading dock and dump it off and no other costs, and a year or so later a few ashes are returned to my family to be snuck in a relative's plot at Wolf Creek. 

Recycling me also appeals to my scientific bent.  If someone can learn about the effects of a life lived on a rich diet, low exercise, and intellectual challenge, then great.   If all that is learned is how to cut and paste in surgery, even that is fine.  Even better would be a few parts reused, although I hope to use up mine to the fullest extent before passing them on.    

After the exam and the edgeline BP, I promised to lose 25 lbs, exercise regularly, give up salt, and try to cut down on lying both ways.

I have a followup BP and weight check in a month to see if my promises are actually being followed.  I figure if I lose 5 lbs in a month and my my BP is 149/82 (rather than 150/83) I will be given an "atta boy" and left along for another 2 years!

I made a point of weighing in with my shoes on and my pockets full, so emptying them and removing my shoes should get me half way there!   

Often someone sits down at the Atrium piano and plays a song.  If only I had listened to my mother and continued my lessons, I too could sit down and impress the old sick folks sitting nearby.

Famous bronze statue of man passing a kidney stone and crying out "Why me, Lord?, Why me?"

Everything is stored on the computer!

The inside of a Family Medicine exam room -- for a Nurse Practitioner.  A place to hassle out of shape, overweight old people, while getting paid to do it.  The perfect job for a masochist!

The blinds are closed on the ground level room--the view is out to the north and second street.  

Everything about your health record is instantly available on the Mayo Clinic computer system.  The Clinic just signed onto a new project to replace the existing system with a system called "EPIC."  A huge job for the IT professionals (which I used to be at Mayo).  

A private booth so you can change into a flimsy gown with dignity and privacy before getting an exam that probes your inner-most cavities. 

Some of us look better clothed.  An old man taking a selfie. Does he look like his blood pressure and weight are above average?  Some of us are happy to be above average any way we can. 

Is the fuzziness is due to essential tremor, Parkinson's or neuropathy?    

And after the exam, I can look up everything in the online Mayo Patient application.  Here are some notes from Thursday's visit.  The PHQ is a depression test -- some questions to see if someone as old and decrepit as me is likely to off himself in the next few weeks or months, giving the clinic bad publicity.  The 0 on the test means zero thoughts of ending it all in the last week.  

IMPRESSION/REPORT/PLAN #1 RN blood Pressure check PATIENT EDUCATION Patient reports having had previous education on diet and diet which could lower his blood pressure. He laughingly states that he could be motivated to lose weight and watching his dietary intake if it meant not taking a medication, but is willing to if that is what Dr. A____  feels is necessary. 

He reports that with his Myasthenia Gravis Dr. A___ was worried, but now that he no longer has symptoms, he feels great. 

His PHQ-2 was 0 with no suicidal ideation. I will review with Dr. A___ and contact the patient with additional recommendations. He uses Mayo mail out pharmacy

IMPRESSION/REPORT/PLAN Dr. A___ has reviewed. Per Dr. A____ the patient was told "by new guidelines based on age, blood pressure less than or equal to 150/90 is acceptable, so he is right there. At this time she would recommend working on diet, exercise, and lifestyle changes to see if this number can decrease some, but he can hold off on medication initiation at this time. The patient states he is well aware of what needs to be done, it is just getting his head and body to go along with it that is the hard part. He plans to work on this. He will continue to monitor his blood pressure at home and notify Dr. A___'s office if blood pressures are going over 150/90

IMPRESSION/REPORT/PLAN  Per Dr. A___, labs test from 1-29-15 including TSH was elevated at 13 and TPO Ab was also elevated. Recommended to increase Synthroid from 75 mcg to 88 mcg (although with the elevation he may need 100 mcg) then recheck TSH in 8-12 weeks. Patient states he is taking Synthroid on an empty stomach at least one half hour prior to breakfast. BMD osteopenia, is stable and improved compared to last check. Recommended to continue Fosamax at this time for at least 5 years.

I had tests for ongoing thyroid autoimmune disease (my immune system has met the thyroid gland, decided it is an enemy and is creating antibodies to destroy it --TPO antibody test).  The treatment is to let the immune system wreak it's destruction and take synthetic thyroid medicine to compensate for the lack of thyroid output.   

I had tests for osteoporosis and have been taking a bone density medicine Fosamax, and that appears to be working and so I get to continue that.  I would very much appreciate increased bone density, although the opportunity rises rarely.  

As part of my winter overhaul, I am getting an eye exam to see if my cataracts have "ripened."   My vision is OK, although increasingly my world view is dimmed by floaters (air gaps in the vitreous humor).  I find these gaps in my humor distressing.  It appears that my large doses of prednisone in 2012-2013 for myasthenia gravis (still in remission) did do a little extra mucking about ( I think the medical term might be some other word) with my vision.  

Anyway, I feel fine, it is nice to have someone worrying about my health, and I suppose I will have to try to cut the BP as I have a followup check in a month to see if I am headed in the right direction.  

The goal of modern medicine is to keep one alive until all of his money and insurance are used up paying for the privilege.  I am trying hard not to abuse Medicare and my insurance by having a living will that says "if Mr. Hanson is unable to enter his password into his computer within 1 minute, you should pull every plug that connects him to life and Facebook and his blog."

Good health to you all. 

Margo's back is home

Margo comes home from back surgery assisted by her favorite son, Scott.  

After back surgery that turned out to be a decompression rather than the more complicated fusion (the surgeon wasn't sure which he would do until he got into the surgery),  Margo is back home and getting around with a walker.  Her leg pain is gone, replaced for now with some surgery pain, but that will go away in a few weeks. She has to be careful for a couple months and then should be back to normal!

Surgery was Tuesday, she came home Thursday.  The surgeon has a followup meeting in 2 weeks to see how she is progressing. 

That wasn't the only good news of the week.  Brother Ev had his checkup to see if leukemia had returned (he had a year of chemo back in 2006 ?).  His tests were normal and he doesn't have to go back for another year.   The tests are to see how many white blood cells are in his bloodstream.  If they get high that is the sign of cancer returning.  

Goal:  Eat and Eliminate--the Retiree's life!

Dad had leukemia in his last few years.  His white bloodcell count never got high enough nor did he have symptoms to need treatment.  Sort of a low level condition, that in his last year actually dropped back into normal.  He joked that the cancer had looked at how badly he had deteriorated at age 88 and decided to give up!  He had Parkinsons that made his last year very difficult--he had to have help with most everything.  Mom and his sons were able to keep him at home, something he appreciated. 

Health issues have been with Margo since being diagnosed with Cancer in July of 2012.  A year of treatment got rid of the cancer but knocked her down pretty much.  She was gradually getting her strength back when her father had a stroke in March of 2014.  She spent several months staying with him and during that time messed up her back.  He would have had to go to a nursing home, but with her help improved so instead went to an assisted care where he is getting along pretty good now.  

Assisted care is your own apartment with meals provided and someone to help with your meds, bath and maybe getting dressed if you need it.  It is very expensive, but leaves you a reasonable amount of independence.  Merlin, Margo's father, can't drive anymore, but calls a taxi when he wants to go somewhere.  Living in a bigger town makes those services available. 

So, we are getting our Christmas cards underway, thinking about some cookie baking and in general getting back to normal.  

I am in pretty darn good health.  Two years ago, I was under the weather with a severe autoimmune illness, myasthenia gravis.  A year of treatment with very high doses of prednisone and it went away and has stayed away now for 20 months without needing any medicine.  I am hopeful it, like Ev's cancer, will stay away!

Mayo Clinic is a pretty great place to go when you have medical problems.  Margo's surgeon only does backs, and he knows what he is doing!   

Myasthenia Gravis 18 months later

Remission continues for me.  A fellow patient isn't so lucky.  

May 22, 2012, I started to have double vision on top of some other physical problems (extreme tiredness) and was diagnosed at Mayo Clinic as having Myasthenia Gravis (MG).

MG is where one's immune system churns out antibodies that attack, block and destroy the connection between nerves and voluntary muscles.  The primary result is weakness and inability to do physical things and eventual death without treatment.  It is chronic (not curable, but treatable).  

After a hospitalization for difficulty breathing (yes, breathing muscles are voluntary), I began treatment to suppress my immune system and in about 6 months most of my MG symptoms were gone, replaced by prednisone side effects.  So, the next step was determining the minimum level of prednisone needed to rid myself of most MG symptoms while having the fewest of prednisone side-effects (pretty terrible).  

In tapering the prednisone from extremely high doses to zero over many months, I finally got off of it altogether last April, and now for 9 months have been symptom free without meds -- remission it is called.  For most folks with MG, it will likely to return again sometime in the future.   About 15% of people do get a long-term remission that may last months, years and decades.  

I am optimistic MG is gone permanently, although the statistics are not in my favor.  I had MG for many years before it was diagnosed--my doctors couldn't figure out why I was so easily fatigued and attributed it to being out-of-shape.  However, as I couldn't really do much active without fatigue and getting immediately out-of-breath, I couldn't get into shape. 

I attributed this to some personal moral failing--I just was too lazy, or lacked self discipline, and got to the point where I accepted that I was just lacking in this area--my fault.  My doctors reinforced this idea I was at fault as my lifestyle was not good, or I would be healthy, as there was nothing wrong with me they could find out.

Undiagnosed, blamed for my illness, and having difficulties doing the things I liked to do, life was pretty bleak.  

When, in May 2012, when my eyelid refused to stay open and I got severe double vision, the doctors were motivated to run some additional tests that showed I had MG--blood levels showed bad antibodies.  

Breathing a sigh of relief that there was a physical cause for my problems, not just innate laziness and lack of will power, I began the treatment--which took almost 6 months to get me fully mobile and functional so I could walk around and breath all at the same time. 

 MG had destroyed about 80% of my muscle receptors by that time (however they regenerate when the antibody attack is lifted).  

During the first 6 months, when things were not improving, I contemplated ending things, however, one of the support groups that kept me going was at dailystrength.org, the MG forum where people like me discussed treatments, outcomes, and railed about our years of mistreatment in the medical field.    They counseled patience and along with the stories of misery, were occasional stories of success and improvement (people who got healthy left the forum, those who didn't stayed there--so one gets a skewed picture of things at times). 

I haven't really thought about my MG for many months as I am truly in remission, and I don't want to think about it returning, but a few days ago, one of my MG fellow sufferers got a shock, that brought MG to the forefront. 

She is a 50 year old woman, a runner who ate right, lived right, and did all the right things, but about 18 months ago too was diagnosed with MG.  She chronicled her path through MG online, writing wittily of her battle to keep a semblance of regular life as a mother, full time worker and athelete.  

  I have never met her other than through her posts on the MG forum.  She took much the same treatments as I did, but her path has been to more and more problems. Her neurologist and other doctors (at the big U in MN) seemed to have no solutions for her problem and her physical ability dwindled.  She pushed her many doctors hard, and switched a few times when she found MDs who would not take her seriously.  

She is still pushing, but now they take her seriously, in the hospital, in a fight for her life from failure to diagnose cancer in addition to MG.   

In January, having leg pain, her medical team imaged for blood clots and found, incidentally, she has cancer that has spread to several organs, possibly starting in the pancreas (probably the worst possible cancer when found at her stage IV level--spread to several organs). 

She had been under the "highest quality" treatment for 18 months, at a premier medical institution and only now, when it has spread to several organs, was cancer diagnosed--and only accidentally as it showed up on a scan for blood clots.  Why so long to find this out? Who messed up?  Her future is fraught with peril as the cancer is spread, so whose fault is it for missing this so long?

Margo's Radiation Begins

Yesterday, Margo had her radiation treatment setup for the final phase of breast cancer treatment.   She starts the treatment on Monday afternoon and continues 5 days per week until June 10th.  

Margo is getting along pretty good.  Her father was up to visit early in the week to make sure she is OK.  Her father turns 88 in mid June.  He just traded his last year's model Ford Focus for a new a Ford Fusion.   He and Scott spent a while trying to figure out how to turn off the emergency blinkers.  There are few knobs or buttons--most things are controlled from a touch screen computer.  

The Polk County Fair book is available online and probably in local banks.  You can find it at http://www.polkcountyfair.com/Fairbook.php  Entries are due June 12th for the Fair beginning July 24th (entry day).  Entry cost is $6 and you can enter from 1 to 23 items for that $6.  Plus it allows you free entry to the fairgrounds for the whole 4 days of the fair!  Not only that, you may win some ribbons and money.  Margo and I always enter a bunch of things and more than make back our $6.  

This year, the Sterling Laketown and Eureka Historical Society hosts the Red School House on the fairgrounds for the Polk Co History Society.   We are hoping to get each of the local history societies to participate with an exhibit and some time in the school house.  It is a great place to rest up as the only air conditioned area at the fair with free ice water and cookies and a chance to visit an 1850s school house!

Down here in Pine Island for a few days, to make sure Margo gets into radiation smoothly, I am taking it easy and waiting for next week's warmup to head back to the cabin and bottle 30-40 gallons of syrup waiting for me.  We ran out of wood slabs for cooking sap, so have to remember to order another load this spring.   

I have been off of medications for Myasthenia Gravis for a month now waiting to find out if I am in true remission or if MG will come back.  I was taking prednisone to stop the immune system from making the bad antibodies that attack my nerve-to-muscle connection and make me weak.  So far the MG has not come back, but the withdrawal from prednisone has been difficult, as my muscles and joints ache and are sore so without ibuprofen or other pain killers, I walk around like a much older man than I really am.  Supposedly, my adrenal glands have been shut off by the prednisone I took for 10 months to stop the MG, and they have to get started again to produce the normal cortisol that will again let me feel only the normal 66 year old aches and pains rather than what I have right now.  I am waiting for that to happen and also waiting to see if MG returns.  Another month or two and something will happen--just uncertain what.  In the meantime if you see me creaking around, offer me a couple of aspirin.  

We had another 2 inches of snow this morning on top of the 16 inches yesterday.  Quite a few broken off branches to clean up and still light snow coming down.  We set a record here in the Rochester area for most snow ever in May.  The snow doesn't really bother us too much, but yesterday, having the electricity off from 5 am until noon showed us how unprepared we are for losing the juice.  Our only heat is a propane furnace that requires electricity; our rural well requires electricity; we found a couple of scented candles and flashlights with the batteries already haven eaten out the metal, so need to make a trip to the local hardware and stock up.  Probably a generator would be the most useful--although we would have to put outlets and plugs for the furnace and well.   Luckily, in a few days we will forget all about it and be just as unprepared next time. 

Myasthenia Gravis Update

As most of you are aware of to the extent of boredom of my finding out I have Myasthenia Gravis (MG) last May, I will pass on the latest news. 

After nearly a year over which I got quite weak and then, taking high doses of prednisone, much better by December, although messed up other ways by the prednisone,  since January I have been gradually reducing the amount of prednisone I take each day.  

The goal was to reduce prednisone until the MG muscle weakness came back.  The good news is that I have reduced prednisone to zero (at zero for the past 3 weeks) and so far MG has not returned and I am almost normal physically again.  I say almost, because when you take off 6 months when you can't really do much following another year or two of limited activity because of the leg and knee problems, getting back to full activity requires a lot of muscle rust removal.  

For the past 3 weeks I have been not only off prednisone, but very active doing maple syruping.  It has gone well.  I do have lots of muscle aches, but they seem to be the kind that come about from prednisone withdrawal as well as using muscles that have been idling much too long.   I figure I will make it through the last 3 days of the maple season--we pull the taps on Saturday when the weather gets in the 60s and sap spoils quickly.  

15% of people who get MG go on to a remission that can last the rest of their lives (or maybe only months) where they don't have to take drugs to lower the immune system.  Right now, it looks a little like that may be happening to me.  However, I really have to wait a few more months to know for sure.  In any case, I do know that if it comes back, I can beat it back by taking prednisone or something else to lower my immune system to stop it from making antibodies that attack my own muscles. 

 MG was bad!  The treatment, prednisone was bad!  But at the moment I am OK, at least as OK as an overweight out-of-shape 66 year old should expect to be.  

And to top it all off, my mind is tarp as a shack!

4 AM --and All is Well

When maple season is over there
will be time for pancakes and
pure maple syrup--right now
way too busy!

Just came in from throwing more wood on the maple sap boiling fire.  It is 4 am, the rain and snow has stopped and it is 32 degrees outside and 50 in the cabin.   Overslept and the cabin stove and the sap cooker were both down to just coals--so had to nurse them back to a fire again.

Walking the 100 yards to the cooker with the cabin yard light on and the sap shed light on, half way of the journey is dark.   I have a $1 one-AA battery 3-LED flashlight that has used the same battery for two years now.   It is wonderfully bright compared to my regular flashlights--all with almost dead batteries after a few months of use. 

Before looking at the thermometer on the open cabin porch, I have already guessed it is just under freezing as I crunch through the snow, feeling a wet bottom to each step.  The driveway maple has 4 5-gallon pails on it that were emptied at 1 pm yesterday; two of them look almost full with 4 gallons of sap and two with 2 gallons.  The sap was dripping at the 10 pm when I filled the sap pan and the wood.   The other tree next to the driveway hasn't dripped at all--I think the dozen folks who tapped this year didn't remember to stay a few inches away from old tap holes.  

I haven't counted the pails out, but I think there must be about 100. The maples grown on a single long west facing hillside.  Those at the bottom have been running on and off for 10 days.  Those on the steepest hillside have barely run at all.  On the plateaus midway down the big hill have run too.   

None of them ran Sunday - Thursday last week, but started Friday and have been dribbling away so that I collected about 250 gallons of sap Friday-Sunday, with what appears to be 100 gallons run since Sunday pickup at 11am to 1pm.  

I started cooking Friday afternoon when I got about 150 gallons of sap.  I have been cooking and adding sap to the 50 gallon pan since and have cooked about 200 gallons so far.   At 4 am I decided not to add more sap, but to finish this batch today, then clean the equipment and immediately start another batch while the fire coals are still hot 

While I was adding to the fire, two cars drove by headed east to the main highway.   "Going to work I suppose. Wonder how they can stand it to get up every week day and leave at 4 am?" I thought as I crunched around rustling up more firewood from the pile for the fire.  Getting up at 4 am as part of the few weeks of maple season is tolerable because I know it will soon end.

The boiling pan is 8 feet long and 2 feet wide and about 5 inches deep--it holds about 60 gallons of sap.  This morning it is only half full from boiling--30 gallons left from 200 gallons of sap.  I think my sap is averaging about 3% sugar, or about 33 gallons of sap per gallon of syrup.  That means I have to cook it down to 6 gallons left -- just enough to cover the bottom of the pan without it scorching in the high points of the 60 year old metal cooker--that sags a little in the middle.  

As I am up now, I will just lie down on top of the bed with my snow boots off, but dressed, and rest my eyes a little while the cabin warms up, the sap comes up to boiling and at daylight begin the firing in earnest, collect what I guess will be 150 gallons of sap (3 hours of hard work) and start testing the sap-turned syrup to decide when to take it off the fire (before it is fully cooked--but not much early) and clean up and restart the next batch. 

I think it is time to call some of the helpers who put out the taps for us this year (we weren't going to do it, but my nephew and some of his relatives and our friends put out the buckets).  Dick and Jeremy did most of the work for the first batch and got the syrup from it.  Maybe some others would like syrup in trade for labor. 

I am in a remission from Myasthenia Gravis--a disease that makes the muscles weak from attacks on the nerve-muscle receptors by my own immune system.  It started last May and with lots of prednisone has been improving until November, when I started slowly tapering off of 60 mg per day until two weeks ago I stopped it altogether.  

Normally you don't stop it, you just drop it to the lowest dose that works.   However, 15% of people go into a remission that they don't need drugs again--rare, but worth trying to find out if you are one of those.   So, when Myasthenia gets under control, you taper to zero and then wait a month or two and see if it comes back.

In the meantime, I have been able to work on the maple sap OK.  The first problems I had with MG is being out of breath when I tried to work.  That was gone last February but seems to be coming back, so my hunch is that by May I probably will have to go back on medicine.  But at least I know the medicine does get me functional.  Without it, I had double vision, difficulty chewing, typing, walking etc. 

Scott went back to MN to help Margo.  She had a series of appointments to drain a seroma--pool of blood or lymph fluid that formed under the removed breast skin flap, preventing the skin from attaching to the chest wall.  It was drained, an tube left in and this week she has 3 appointments to check on it and finally remove it by the end of the week.  Otherwise she has been recovering from chemo and surgery fine.  This is a minor setback, but sometimes the overall bother of the treatments gets to her (started chemo in August last year).   I tried to remind her that her cancer is gone, and this is just the healing process going on, albeit slowly, and that the 5 weeks of radiation ahead are not because she has cancer anymore, but to prevent it from coming back.  However, it is hard to remain cheerful when you don't feel good enough to help with the maple season!



   

Spring Snow

Did you know the Norwegians have 3 different names for snow?   The names translate into:  Snow, Uffda Snow and Uffda Snow yah sure ya betcha!  
Well this morning at 6:30 I heard rain or snow pelting the roof just above me in the sleeping loft.  It brought me back from a pleasant dream of sitting in the maple shack cooking maple syrup, basking in the warmth of the wood fire.  Actually, the electric blanket was turned up, and the cabin was cold, the fire having gone out. 
  When Margo isn't here, I fire a little a night, and let it go out when the temps are freezing or above, and then start a pine slab fire in the morning to warm it up.  No need to go down and throw in wood in the middle of the night with the electric blanket still not turned all the way up.  
   It was 34 outside and 42 inside.  The ground was bare, except for a little sugar snow on the toilet walk, the scenic stroll from cabin to bathroom.  

Sugar snow at 6:30 this morning at the cabin

Looking out over the lake, the ice was still wet looking, the woods still brown.  

Most of the snow is gone at the cabin, the lake is still frozen over, but is open where the creek comes in and leaves.  A hint of white in the brown grass at 6:40 am from the sugar snow and a touch of rain. 

By 7:40, the snow had started coming down.  

By 8 am the ground was getting white

By 9 am it was snowing hard with about an inch on the ground
and by 9:30 the snow was easing off, bigger flakes though.  Temp had dropped to 29 degrees.

  Yesterday and the day before, I collected about 15 gallons of sap off of about 100 buckets. Most of the hillside trees haven't run at all yet.  I have about 50 gallons of sap on hand, but don't start cooking until I have 150 gallons.  I need that much so when it boils down the whole bottom of the 8 foot x 2 foot pan is covered.  Less sap, and I can't cook it all the way down.  

So my strategy this morning: build up the cabin woodstove fire to bring the cabin up to 60 degrees. slice and fry some baked potatoes left over from last night with mushrooms and tube steak sliced, add some toast and coffee and read the morning newspapers (I subscribe to the Star Tribune and New York Times online).  The rest of the morning is to work on the Sterling Settler's picnic 75th anniversary book.  I am stalling working on that right now;-)

I cleaned out the 1987 Ford F150 4x4 truck yesterday.  If it passes the "frame not in terrible shape" check, plan to have neighbor Chuck take it to his garage in Coon Rapids and put in a new clutch.  Chuck farms our cropland, and some of rent is by barter.  A 1987 vehicle driven in WI and MN during the winters, gets the full salt effect, so even though the engine works fine, the body looks about like a 1946 model person feels.   Parked it right by the driveway entrance so if the snow gets deep, can put it in 4-wheel drive and slip out to Cushing for emergency supplies.  The clutch only slips in 4th gear going up a hill or flooring the gas pedal--so lower gears are OK.  I think oil is leaking from the rear bearing onto the clutch causing the problem.  
   My myasthenia gravis has been in remission for a few months, so I  am able to do most anything I need to with maple syruping.  Am finally fully off of prednisone waiting for either the MG to come back, or find out I am in a true drug-free remission (15% chance). In the meantime it is good to feel mostly normal again.  My 1 year old new knee is working pretty good too.  Now if my memory would kick in that would be helpful.  Keep meeting folks I should know and I can't remember them or their names until they remind me. I always had a problem with names and faces anyway, and it has gotten worse, at least according to my friends.   Last one I forgot was a lovely lady who seemed very familiar--her name was Margo, but just couldn't place her.  Must have been the new short hair style she has. 

Maple Syrup Season Begins!

Drove from SE MN three hours north to our NW Wisconsin cabin on the lake.   Nephew and friends tapped the maples Saturday and put out 200 buckets.   Margo sent me off to enjoy a few weeks away from helping with her cancer treatments as she is feeling fine and taking a month before starting radiation.  If I get the cabin opened, cleaned, the water started and everything ready, she may join me for a week or two later in April. She has to work on getting her arm range of motion back after the surgery.  



  We built the cabin from trees we cut and sawed into lumber (we have a 100 year old sawmill on the farm) back in 1975.  Down the hill a few hundred yards is the 30 acre lake with a creek running through.  It is rustic, but rather fun to get to.   Of course, I had the high speed internet turned on before I got up here--can't be too rustic;-)

 This is a test of my physical condition.  For the last 150 years my family has been making maple syrup in Wisconsin (and before that in NY, and CT).   Last year I skipped the season as I had a brand new right knee  as of March and couldn't do the carrying buckets and work (my nephew did it that year).  This year I will be testing my wonderful new knee that had just got functional when I got MG and was mostly inactive for the summer and fall.   MG seems to be fine; my knee quite functional, and so I am hopeful that I can have a normal season.  Nephew Bryce and his friend Neil are the sparkplugs this year and I am the sage advisor!


When my cabin was broken into last month, the item that I missed most was my Roku box that turns my old clunker cabin TV into a smart TV.   I stopped at Walmart on the way up and bought a D-Link replacement streaming video player ($48) because it has a youtube channel--Roku doesn't.  Got is set up in a few minutes and it works fine--quite nice to have netflix, youtube, etc on an old tv. 

If you want to see a maple tree dripping this afternoon check out my exciting video at 
https://www.facebook.com/photo.php?v=4911892514871&set=vb.1224894731&type=2&theater

I will be blogging maple syrup season at the cabin.  

I get this feeling that I am normal again--quite wonderful although I keep waiting for Myasthenia Gravis to return as I taper prednisone and it wears off and the bad antibodies return.   I intend to enjoy it while I can.  I think it is due to my special diet of potato chips, red meat with lots of fat, hot dogs, and of course drinking a pint of pure maple syrup each morning straight!

More Sick Stories

  Prednisone and Myasthenia Gravis (MG)
Folks like me, who have an autoimmune disease are treated by taking something that puts our immune system into low gear overall, in hopes that production of bad antibodies will stop, or at least slow down so we can function.  I take prednisone, effective, but filled with side effects that, for me include weight gain enhancement (I can add a lb by looking at a piece of cake), and erratic blood pressure, blood sugar, mental stability, osteoporosis, and a few dozen other exciting and novel conditions.  So, we all try to figure the lowest effective dose.

At my last visit with the neurologist, I found out that tapering it might work best for me by taking it on alternate days, then every 3rd day, every 4th day etc, until either MG returned or I got off of prednisone totally.

Woke up this Tuesday feeling OK. Tuesday is the day for 30mg prednisone on my every 3rd day regime started March 4th, my experiment in trying to get off of prednisone and see if my underlying Myasthenia Gravis (MG) comes back again.  There is a slight chance (15%) that I am one of the few who goes into a natural remission--but I can't find out without quitting prednisone.

"What the heck," I thought recklessly, "might as well go for every 4th day instead of waiting for April." And so I skip prednisone on the 4th day.   No signs that MG was returning, nor problems with prednisone withdrawal yet.


Supposedly sudden withdrawal from pred. is fraught with peril, but not yet for me.  Dr. Google says abrupt withdrawal symptoms may include:  confusion, headache, fever, joint and muscle pain, peeling skin, weight loss, nausea and vomiting, dehydration, muscle weakness, and difficulty breathing.  None have appeared yet.  Wonder if it takes longer to crash?

Prednisone stops the adrenals from producing cortisol (sort of body made prednisone).  The withdrawal symptoms are because the adrenals have to restart again and produce their own stuff.  Somewhere in the quitting prednisone and startup of adrenals is a gap where the body is short on the stuff for awhile.


A trip Tuesday to Mayo for Margo. Walked briskly for 30 minutes roaming the subterranean passages under Mayo that only a former employee would know, before heading to the 19th floor to strap on a 24 hour Holter BP monitor.

My family doctor worries about my somewhat high 162/92 blood pressure--is it real, or just when she is holding my hand (30 year old very attractive woman). So, every 10 minutes the portable machine inflates the cuff, my hand goes numb, and another pressure is read.

Tuesday evening I am relaxing in my recliner, trying to get ready for the night shift with every 20 minute machine squeezes.  Everything seems normal.  Heck, if I wake up, may try skipping another day of prednisone.  Remember friends, my goal is to find out if I am in true MG remission--that MG has gone away and I no longer need to treat it.  I suppose, my reckless behavior might be attributed to prednisone withdrawal confusion ;-)

Wednesday March 20th--the first day of spring starts out at 4 degrees above zero here on top of the big hill west of Pine Island.  Down the hill in Pine Island it is 1 below zero! Living on top means more wind so the temperature advantages don't really matter.  The cardnials and chickadees are singing spring songs despite the 12 below windchill.

Another morning feeling reasonably good. So, for the 5th day in a row I am skipping prednisone.  Wondering if MG symptoms (double vision, closed eyelid, breathing difficulty and weakness will return or if I the prednisone withdrawal will start, or if I can tell the difference).  I do notice sore joints that I haven't had for many months. Prednisone masks the normal aches and pains of old folk's knees, elbows, hips etc.

My BP monitor, after waking me up for a couple of 20 minute starts at night, soon was forgotten and I slept through. When I awoke with the sun shining in the window, I took the BP monitor out of the pouch and watched it go through a cycle. At the end of a the cycle, for a few seconds, it shows the BP reading and HR.  The values were well down in the normal range!   Makes me think that all I need to do to have normal blood pressures is stay in bed or the recliner more of my day!

My prediction:

Doctor: "We don't have to treat your BP, but if you would lose 20 lbs, it probably would be back in the excellent range all of the time."
Patient: "Sure thing, that is next on my schedule."

Margo and I retired 7 years ago (just striplings at the time) and have spent most Jan-Feb's in the deep south avoiding the MN/WI winters. Of course this winter we had to stay near Mayo for Margo's chemo.   In LA, AL, and TX we acquired a taste for grits, biscuits and gravy, and ham steak with red-eye sauce.

Up here those are rare, so for breakfast today I do my imitation.  We buy the canned version of B&G, Pillsbury refrigerated biscuits, and substitute our own MN made Hormel Spam with Soy Sauce for ham steak and redeye. Once a week we try it--and if I am ambitious, some cornbread in place of the Quaker instant cheesy grits.

Margo is recovering nicely from surgery. The flood of advice from her doctors are "do the radiation, as 5% chance of cancer recurrence is much better than 30%."  Margo agrees.  So 5 weeks of 5-day per week treatments are likely to start in mid April.  Her hair continues to come back--now a fraction of an inch, but giving her head some dark color again.  She hasn't taken out the vacuum cleaner to redo my efforts yet, but I think by week's end she will be at it a sure sign of returning health.  ;-)

30% -- Margo and Radiation

Monday--March 18th  Update on Margo's breast cancer
  
Got back through the blowing drifting snow from Margo's post mastectomy surgical checkup.  One of the two drains was removed, and the healing is coming along fine.  She is still quite sore, but improving.  She got a refill prescription for another 30 oxycodone pain killers, so should be set for another week!

  After that check, we went to visit the Radiation doctor.  Initially Margo was told that chemo, surgery and radiation were all necessary parts of her cancer treatment.  We had some hopes that since chemo had gotten rid of all of the known cancer except for a 1mm spot in a single lymph node, and that her swollen lymphedema/scleroderma left arm and hand were likely to get worse with radiation, that she could skip it. 

   The radiation oncologist said:  With triple negative cancer where even a small amount was found after chemo and surgery, the chances of cancer returning within 5 years is about 30%.  With radiation, this drops to about 5%.   She also estimated that radiation has about a 30% chance of permanently scarring and further damaging the arm in Margo's case where there are already problems. This would leave her arm with less strength, possibly more swollen, and with difficulty raising it above shoulder length without daily exercises the rest of her life.  

   We hedged a little on the decision for radiation.  We asked to have the lymphedema and scleroderma doctors weigh in on the arm problems.  If the arm truly has scleroderma, an auto immune disease, then it can be treated by prednisone or any of the drugs that treat MG.  If not, they wouldn't help, and something else is wrong.  

   Radiation treatment for her was set at 5 weeks of 5 days per week and would begin about mid April.  Although it is likely Margo will go ahead with it, we haven't scheduled it yet.   The radiation oncologist said she asked two of her colleagues and one counseled no, and the other yes, and that the final decision would have to be Margo's.  So the question becomes one of balancing risks of cancer returning with the potential loss of use of her left arm (she is left handed).  

   "If Margo skips radiation and the cancer comes back in a few years, can't it be treated then?" I asked.   
    "Yes," replied the doctor, "but there would be about a 30% chance it wouldn't be successful then--an ounce of prevention is worth a pound of cure."   
     "How about taking only part of the radiation treatments--maybe 30% of them?" I asked.  
     "No, all of the treatments are necessary to get rid of any remaining cancer in the breast and lymph nodes in the armpit area."
    
  So right now we are about 30% likely to skip radiation and 70% likely to do it. 
    Margo has been without the use of her left arm and hand since September--she has had the arm and hand wrapped with a cushioning sleeve and elastic wrapped around that along with individual finger sleeves.  She takes them off for an hour each morning.  Without them, the arm and hand swell up tightly and could break the skin.  With them the arm and hand are not usable, but don't get worse.  It appears that somehow the chemotherapy along with an MRI injection that missed the vein caused the problems, and 6 months later, nothing has solved it yet. 

Surgery Monday

Update 8:00 Am Tuesday   Other than needing some sleep, things appear to be going fine.   The bleeding stopped; she is feeling OK and says she will sleep all morning to catch up.  Still is likely to come home this evening. In a day or two we will get the results from the pathology lab to find out if there was any remaining cancer in the breast and lymph tissues. The surgeon and initial lab report said none--but a more careful look is being done.
   
   I have been trying to understand the problem with her swollen left arm and hand--which we thought at first was due to an injection of MRI contrast fluid that missed the vein--but appears to be something else.   Then we thought that it was lymphedema--problem with the lymph system draining fluids in the arm and hand.  However it has not been responding to lymphedema treatment very well.  
    Blood tests showing some extra antibodies seem to say that what is happening is a localized scleroderma--an autoimmune disease where your immune system makes antibodies that attack your own tissue (yes--that is what I have with Myasthenia Gravis)  except Margo's is attacking just some of the arm tissue.   If that is the case, she too may end up taking prednisone or something similar to improve the arm and hand.   That  treatment will come after cancer treatment is finished.  In the meantime she has her hand and arm tightly wrapped all of the time to try to keep the internal pressure in the arm/hand from swelling the skin too much.  Scleroderma, like most autoimmune diseases, has no cure, just treatment.   However, that seems to work for many folks. 
   It appears that the chemo or the cancer or maybe the MRI contrast fluid may have activated Margo's immune system to produce the antibodies that are causing the problem (if this is really what is wrong).  Our immune system is always on the lookout for new challenges to our health--and mostly does a great job of identifying the bug and creating new antibodies to get rid of it--however, there are times when it starts production of a new antibody that is self-destructive.  
    Scientists have identified about 100 autoimmune disease and think there are at least another 40 that are likely.  About 25 million Americans suffer from them.  Many have only been identified in the last few decades.   Treatment is quite standard--take something to lower the immune system overall. 

   As they say, when it rains it pours!

Update 1:30 AM Tuesday
At 1:30 Margo was out of surgery.  The blood was drained and no blood vessel was bleeding, so everything appears to be OK.   The surgeon said that if Margo feels OK, she still may go home late Tuesday.  The surgeon said that part of the reason for sending folks home from the hospital soon is that patients in hospitals are exposed to more infection risks than at home.  It appears that everything is OK and this was a minor problem--but needed to be checked out.  

Update 11 pm Margo went back to surgery.  She had two drain tubes left in to allow blood and fluids to drain out.  They were still draining blood this evening and a little swelling was occurring in the area of the surgery--what the doctor said was a hematoma.  The surgery is to drain the blood and see if there is a blood vessel that needs closing.  Margo was alert and doing OK otherwise.  In about 2 hours we should see her back from surgery.  

Update:  1:40 Margo is done with surgery and in her room, alert and looking fine.  The surgeon said things went well--and that it appears that the chemo had gotten rid of the cancer.  Tissues are being sent to pathology to check for cancer cells.  Everything seems to have gone as planned with no problems.   Probably will go home tomorrow evening. 

Update 11:10 AM  operation is mostly over and at the "stitching up" level.  So likely 1:30 to room Methodist 6th floor room 6-415.  Expecting a call from the surgeon with the "results" soon. 

Update: 9:25 AM Monday.  We drove into Rochester through the 5 inches of new snow and got to Methodist Hospital for checkin at 5:30.  Spent an hour in preparations before giving Margo a hug and sending her off to surgery prep at about 7:00am and then Scott and I had breakfast at Pannekoeken across the street.  At 8:20 she went to the surgery room and at 9:06 surgery began.   
 There is a big TV screen with each patient listed and the status, just like an airport flight schedule.   Surgery is to last 1.5-2 hours, with 2 hours in recovery and then to 6th floor to a room.   Probably an overnight stay and released late Tuesday. 
  I have my laptop to take advantage of the free WiFi here.  Margo has been handling the whole cancer process quite well.
   
 Margo reports for surgery Monday 5:45 to Methodist Hospital, Mayo Clinic in Rochester MN.  She will have the left breast and nearby lymph nodes removed. She should be back in her room by about noon.  I will update the blog when she is back.
    Margo has been doing some winter plantings!

Geranium seedlings   -- very tiny seeds growing plants
about 1 out of 5 seeds sprouted--purchased at Menards

We forced spring bulbs --Nov - Feb in the refrigerator
potted Feb 1, and blooming now.  About a dozen pots
shared with our neighbors and relatives

Yellow pear tomato plants 

The basement photo darkroom is now Margo's plant starting area

A mix of ice snow and water after Saturday's rain and warm temps

Anhedonia and Euphoria -- a Phantasmagoria

Spock of Star Trek
Did he suffer from
ANHEDONIA?

My neighbor just down the hill says he will tap his maple trees today!   I stopped to visit as we came back from Margo's daily trip to Mayo and caught him with the blower clearing the 6 inches of  fresh snow at the end of his driveway.

"Last year I tapped February 1st through March 1st, a whole month earlier than normal for me," he   told us.  "Got about half of my normal yield."   He is a physical therapist and his wife a school teacher.  They have a 10 acre woods around their house, full of large sugar maples--quite rare in our mostly prairie area of SE Minnesota.
 
My neighbor's father, Dr. Walters, a physician who had an old style family practice in Wanamingo, had the 10 acres and a small A-frame cabin on it for 40 years and every spring took some time from his medical practice to put out 50 pails and cooked some syrup.  When he passed away 15 years ago or so, his son and wife built a new house there and have continued the annual syruping--making 10-20 gallons of syrup each spring.  They are the only folks around this neighborhood who make syrup as far as I have seen from driving through the area.

Our home is between two branches of the Zumbro river that meander in from the west, cutting deep broad valleys in the prairie lands meeting in Pine Island.  The two valleys make a wedge of land that is about 1 mile wide and 6 miles long, an area that escaped the prairie fires, heavily wooded when the settlers came in 1850s.  Where the rivers joined was the island of Pine.  Where we live, on a high hill midway between the two valleys was an island of hardwoods; maples, basswood, elm, oak, butternut, ash and cherry trees.  The 10 square miles of forest in the midst of a thousands of acres of treeless prairie was (and is) an oasis for wildlife and forest products. Although much of it has been converted to farmland, the steeper valley sides, and as in the case of my neighbor and my forests, pieces of land never fully cleared.     My piece has not one mature maple on it--just a few young ones too small for tapping. We own a 5 acre woodlot strip -- 1/4 mile long and 166 feet wide, sold to a prairie farmer in 1900 for his wood supply.

Maple syrup season appears to be out for us this season.  Margo has cancer surgery March 11th followed by daily radiation April and May.   Mid March to mid April is the maple syrup season most years at Cushing, where our 60 acres of maple woods and lake cottage are usually open for business on March 1st.   I have almost no motivation to tap the maples this season, so I am not too bothered about skipping it this time around.

Which brings me to a health update.  Margo is gradually regaining strength lost from chemotherapy that completed January 14th. Since then she has had daily treatments for lymphodema (swelling) of the left arm and hand.  That means a 50 mile roundtrip to Rochester Mayo five days a week for light, massage and compression treatment. It is helping, but we can't help but wonder what will happen when she has the lymph nodes removed on that side.  Just have to wait and see.

Margo has a dozen tomato seedlings ready to transplant into their own containers this weekend as well as 30 geranium seedlings--all under lights in the basement.  She was so tired and sick from chemo, that December and January were months where just eating, sleeping and getting to medical treatments were as much as she wanted to do.  Now, life is becoming interesting again.  We are told that the left breast mastectomy and lymph node removal surgery and the following radiation is much less of a problem than chemo, so that sounds good.

My own condition is pretty fair physically and rather strange mentally.   I take large daily doses of prednisone to keep my immune system from producing antibodies that attack my nerve-muscle connection and make me weak. It works pretty good and I am mostly functional physically.  However, my mind has gone wonky.  I have developed anhedonia (this is a self-diagnosis at the moment--have to try it on my doctor next week).

For those of you for whom anhedonia doesn't ring a bell, -- hedon is a root word from the Greek meaning pleasure.   Anhedonia means "without pleasure."   Prednisone has this side effect in some small number of addicts-- it takes away the feelings of pleasure that are part of a normal life.

The technical explanation:  when we anticipate doing something we like. when we do something we like, and when we complete doing something we like to do, we get a feeling of pleasure.  This actually comes from our brain releasing dopamine into itself.   When something stops this, we lose our enjoyment in doing things--just a bucketload of chemicals being dumped underlying it all.  This includes not only our hobbies, our jobs, but eating, sex, exercise or whatever gave us pleasure turns into just a flat non-emotional, non-enjoyable dullness.

 Anhedonia is found as a side effect of some medications, is present in some folks with depression and some folks with schizophrenia, and can be found in former drug addicts.  Many abused drugs give their high by bathing the brain in dopamine (i.e. oxycodone/oxycontin pain killers gave me euphoria when I took them after knee surgery) turning on the pleasure response artificially.    However, too much of that can burn out the pleasure areas that dump the dopamine.   Prednisone, in some folks, seems to limit the amount of dopamine produced in the pleasure part of the brain--leading to lack of motivation and enjoyment until you quit taking it   Prednisone can cause other mental problems including confusion, irritation, mood swings, and so on, so folks taking prednisone may think they have strange mental conditions that are really just part of a mental confusion produced.  

My regular doctor, when I complained that I didn't have any motivation nor enjoyment to do anything, said I was surely depressed and stressed, with Margo and me both haviing health problems, and I needed to go on depression meds or seek counseling.  As I am not in the least bit sad, or down, just unbelievably lethargic, I disagreed and went to Dr. Google.  Depression without sadness search led me to pages describing anhedonia--which, I thought, pretty much fit my condition, and gave me an explanation that prednisone probably was the culprit.  

There are alternatives to prednisone for keeping the immune system running on low. So my next step is to switch to one of those as a trial--none work for everyone and some have even harsher side effects.  The process of getting unhooked from prednisone is several months -- it shuts down the adrenal glands and you have to gradually bring them back to life--and the alternative medicines take 3-6 months to take effect.   So, somewhere in March I will being trying to switch over with the goal autumn to be addicted to something else and have the thrill and agony of discovering a whole new set of side effects.    

In the meantime, if I seem to be quite lazy and accomplish little, I would hope you blame the prednisone rather than me.    Although I can force myself to do something because it is my duty, it is surely not as motivating as enjoying it.  That is why I haven't been writing much for the past few months and in fact barely doing anything other than what I must do.  

 To give you an idea of what this is like,  think of what it would be like if sex was always just a duty like shoveling the sidewalk.  I suppose I could be a good Catholic anyway!

  I call my condition "Spockification."   I have the cold, logical, unemotional, unjoyful pure rationalism of Mr. Spock from the Star Trek series.  I am in the tapering down process with prednisone, and I noticed I got irritated with a dodging and weaving driver yesterday while driving through the snowstorm to Margo's appointment--a good sign that some emotion is stirring again.  Now if ice cream started giving me pleasure again....