St Croix River Road Ramblings

Welcome to River Road Ramblings.

Saturday, March 23, 2013

Carpe Die-um

Late May days on the farm were busy ones getting the fields prepared for crops, the pasture fences fixed, hunting the elusive morel, planting and hoeing in Mom's great garden while finishing the last days of school -- that included taking the standardized tests to see if we met the right grade levels. 

While early May brought the suckers down Wolf Creek at Grandpa's, to be speared with pitchforks, sacked and brought to Grandpa to be smoked and enjoyed, late May was when the carp came down from Roger Lake into the slow moving channel below that widened into Lily Lake and then sluggishly moved on towards the St. Croix through wild rice bed and then down to the crossing--where the old road had forded the creek.  

Some years beavers chose to build a dam at the crossing and maintain it until they were either trapped out by neighbors or had eaten all the nearby brush and trees and moved on.  Those years when the dams were in, the water backed up nearly a half mile from the crossing to Roger Lake, allowing us to put in a boat on Grandpa's and row up to the Lake to fish, passing through the 80 acres owned by neighbor Bert, and then where Dad owned one side of the creek and Uncle Maurice the other side through the shallow weed filled Lily lake and the next channel into Roger, a small good fishing lake. 

One late May day, after the suckers were finished, Grandpa "Wish't I had a few carp to smoke. They don't come down the creek anymore past the beaver dam and I'm to old to put in a boat and row up the channel -- and wouldn't I look bad, a good Christian man getting arrested for spearing in a trout stream."  

Byron, who liked to do something different, talked me into going along with him with the Jon boat to get Grandpa his carp.   I can't remember if on this trip, brother Everett went along, but as he often did, I will throw him in the boat too.  Seems right as that will let two of us spear while one rows the boat. 

To spear a fish at night, you need a narrow beam bright flashlight that penetrates into the water to see the fish and you need a spear.   A pitch fork will work, but it lacks barbs, so you can't spear and then bring the fish up without it slipping off the smooth tines.   

Grandpa had an old hand black-smithed spear with a 10 foot handle left from the days when he lived just south of Nevers Dam on the St. Croix and often went spearing with Dad or one of his other nephews, usually Channy or Lloyd.  

The trouble with a flashlight is the beam not only penetrates into the water, but reflects off of it giving away your illegal activity to those on shore, often showing moving beams of light in the sky that, for game wardens, are dead giveaways to nefarious activity on the water.  The Native Americans used pine knots and birch torches to do light their spearing -- thus the name Lac du Flambeau (lake of the flames). 

Grandpa had his own invention,  a 6 volt car battery in the boat wired through a metal pipe soldered into a fruit jar holding a 6 volt car light that clamped to the front side of the boat--lighting the water 2 feet down while invisible above the surface.  

Anyway, Wolf Creek was isolated--half mile from the nearest road through rugged cow pastures with no neighbors who lived anywhere near the creek or lakes north of Grandpa.  We always figured that rather than getting arrested, if we were picked up by a game warden with a sack of suckers or carp, we probably would get an award from the sportsmen's club for ridding the trout stream and lake of rough and undesirable fish (undesirable to anyone but Grandpa and 
Grandma who relished anything that had fins).  

We put in the boat at dusk, and after rowing up the sluggish stream through the narrow rice bed, came to the open channel as it got dark.  The game fish, northerns, bass and panfish were through spawning, or so we thought as they were not in the channel.  Carp came down during spawning season.  

During the previous summer, often when we walked to the back of the cow pasture to get the cows, we walked down the hill to Lily Lake.  Schools of carp were always swimming in the shallow weeds, their back fins out of the water, often splashing around in the weeds.  Carp are bad in a lake as they root up the weeds and make it undesirable for game fish-at least that was the local view from most fishermen who wouldn't eat a carp or bullhead.  

Grandpa's family, although living most of their time in NW Wisconsin, had spent a few years in northern Iowa and Western MN and probably had gotten used to fish other than walleyes, northerns, bass and panfish, and Grandma came from Iowa too--that is my reason for excusing them for liking carp.  Great great grandpa, Olaus, from Sweden, even tried to find eels in the local creeks --a delicacy back in Sweden where they Hanssons lived on "The Stream" that went on into the ocean 10 kilometers from the farm at Stromstad.   Cousin Arne lives there still, and tells me that he remembers they used to have eels in the creek.  

As we rowed into the wider and deeper channel, Byron and I stood on each end of the 12 foot aluminum boat that we had mail ordered from Sears ($75 with the four boys coming up with $50 from hauling hay for neighbor Raymond, and Dad kicking in the other $25).   We could see several big carp along the shore. 

Ev manuevered us over to the edge barely rippling the water as we drifted in and stopped.   I with Grandpa's old spear readied myself, light shining on the tail end of a big one, barely moving at all.  The water was maybe a foot and a half deep. Shining the light near the eyes got the fish spooked, so when the boat was quiet I slowly positioned the spear to strike just behind the head. 

You know, I wonder if it was only Byron with me on this trip.  Or maybe it was only Everett and I.  If it was Byron and Everett, Byron would have been spearing right and left leaving me no time to spear--just have to keep the boat steady.  Yep, it had to be Ev and I, because on this trip I got the try at a  fish.  Byron and I, now that I think of it, went up later in the summer and tried to get a few game fish--but they are just too wary in summer to stay still when you shine a light on them. 

So, Ev steadied the boat, Byron was home watching TV, and I readied the spear and at the perfect moment struck hard and fast a few inches back of the head. 

"Whoa--Ev, my spear just bounced off!" I exclaimed.   

"Carp have a real boney head and shoulders," he replied, "you need to try back a little further."

The carp in getting away had stirred the muddy bottom and scared off any other fish nearby.  So Ev (or maybe it was Byron) eased us upstream a littler further and we lined up on another big carp near the shore.  This time I struck him right in the middle of the back--straight down the spear went burying the 6 inch narrow tines completely.  I pulled the spear up, and got him just over the boat when he fell off the spear onto the boat bottom. 

"Boy, just barely kept him on--too heavy for the barbs I suppose," commented Ev.  

So for then next hour or so we eased around the channel taking turns spearing a few carp and enjoying the beautiful star filled sky.  With evening, down in the low swampy creek bottoms the air cools rapidly and with no breeze, the swamp odors, familiar, strong, and strangely pleasant added to the enjoyment of an evening out in nature, with the thrill of being lawbreakers adding spice. 

Finally, we drifted back down stream and pulled the boat onto the old roadbed at the crossing and took two sacks with a half dozen carp, carrying them over the big hill to Grandpa's house.  The cow path along the creek bank would have been easier to take, but was narrow in places, easy to step off the edge and slide down to the creek. 

Grandpa was awake waiting for us.  "What a great mess of fish!" he chortled as we dumped them out on the picnic table!  Grandma and I will clean them tonight and get them soaking in brine and put them in the smoker tomorrow."

A few days later we visited Grandpa.  "I weighed those carp--one was 20 lbs!  Several were full of eggs--we fried them for breakfast.  Just as good as caviar!   Do you want some of the smoked carp?" Grandpa knew about caviar, as he had caught one or two big sturgeon on the St Croix back in the 40s.  
We politely turned him down, remembering the hippie joke "Heard smoked carp were pretty good." "Yeah, I tried one, but couldn't keep it lit."  And the old fisherman's joke on how to prepare a carp,"fillet it on a newly sawn basswood board, season it on the board, then cook it in the oven on the board, take it out, throw away the carp and eat the board." 
Grandpa, 5 foot 6 inches, 260 lbs most of his life, lived to be 87 years old and Grandma, also somewhat overweight, made 100.  Probably due to having fish every other meal in lean times and every meal when it was available!  

Nowadays with the mercury in most midwest fish, we are told to eat only one meal of home-caught fish per week or suffer from mercury poisoning.  However, there is a secret to getting the mercury out of a fish. Freeze the cleaned fish with the tail left on standing tail to the bottom in a very cold freezer until you are ready to eat it.  Then take it out and cut off the tail.  The cold will have caused the mercury to drop to the bottom!
  Read about sand carp, sand terns, sand alligators and more at 
Strange water beasts of the St Croix River Sand Barrens

Thursday, March 21, 2013

Mending Margo

Eleven days after radical mastectomy, Margo is improving rapidly. She is off the oxycodone, has one of the 2 drain tubes removed, and is feeling much better.  Her left arm/hand are still swollen --and the wrappings are her excuse for not washing dishes--but her fingers are OK to type in the computer.  Notice the darkening hair!

No noticeable gray hairs nor bald spots!  

Still hand/arm swelling that require compression wrappings
Add caption

Spent Friday and Saturday at the Cabin last weekend. Still way too much snow to walk in the woods and too cold to tap maples
The 1975 cabin has a lovely patina
Last of the forced spring bulbs indoors. Outdoor ones are
likely a few days off yet!

Wednesday, March 20, 2013

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.  ;-)

Monday, March 18, 2013

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. 

Wednesday, March 13, 2013

Margo Home!

Margo at home in her "hospital room settings."  She has a sore chest, but Oxycodone is quite wonderful for killing pain and
bringing a smile to her face!

Margo has the start of hair regrowth! It is coming in quite dark--so she is pleased with that.  In a few weeks, she can choose to have a flat top haircut, just like her 87 year old father Merlin, who got one  in the service back in 1946 and has kept the style and his dark hair ever since!   
Wednesday March 13 
Update.  Got a call from the surgeon today.  The pathologist finished examining the removed breast and lymph node tissue.   At the start of chemo there were several tumors including one large 5 cm one in the breast and at least one lymph node with cancer (they biopsied only one).   The good news was that there was no cancer remaining in the breast tissue and in the 6 lymph nodes removed and identified, there was only one with some cancer cells--a spot about 1 millimeter in size or less.
  What this means is that since chemo has gotten rid of all of the known cancer in the breast and all but the one lymph node, it is also likely to have gotten rid of any that may have spread elsewhere in the body.   This info goes into making the decision to do radiation or not with the complication of Margo's arm and hand swelling.  My guess is they will probably say radiation is not required and probably not a good idea--generally radiation is not a good idea if one has scleroderma--maybe what Margo has in the hand and arm.  But we will find all that out next Monday when we visit the doctors again.     

Tuesday March 12th
Margo came home late yesterday afternoon.   She is doing good.  The surgery site is sore and needs regular pain killers yet, and two drainage tubes are likely to be in for a week or so, but she is pleased to be home again.

Next week she visits the oncologist and radiologist to talk about radiation therapy.   The plan was to  do 35 , 5-day per week sessions April and May.   However there is some concern that the radiation may further damage her swollen arm and hand, so the doctors hinted that if no cancer cells were found in the removed breast and lymph nodes, radiation may not be needed.

Margo's triple negative type of breast cancer is treated quite aggressively as it is not easily defeated, and there is no "standard" treatment like there is in the other three types of breast cancer.  Thus the  long and multiple drugs used in chemo, the radical mastectomy and the radiation in the plan.  That said, the doctors were very encouraged that the tumors and lymph node cancers seem to have totally disapppeared after chemo, and their giving the possibility of skipping radiation.

The theory is that if the chemo had totally gotten rid of all of the known cancer in her left breast and lymph nodes; and since the chemo treatment goes through the whole body; it has likely gotten rid of any cancer cells wherever they may be hiding out.   The initial pathology report back from the tissues is that there was no cancer in them left.   However, a closer look is being done to be sure.   And, if there is no cancer found, then radiation may be a choice rather than an necessity. Next week with the doctor visits we will discuss it all.   The complicating factor is Margo's left hand and arm that are likely to be damaged more by radiation.

In the meantime, Margo is walking around, eating, and other than twinges of pain when she moves the arm and her pain killers wear off (she has to learn how often to take them), she is doing well.  Thanks for your thoughts, prayers and support.  


Tuesday, March 12, 2013

Early springs of the past

In 1938, Cushing neighbor Lucy Orr Johnson's column in the Inter-County Leader talked about mild winters.  2012-13 is likely more of an average winter with a slow spring.

Sunday, March 10, 2013

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

Monday, March 4, 2013

Margo Ready for Surgery Monday

Spent the morning with Margo at Mayo getting a pre-surgery check from Oncology and Surgery people.  Monday, the 11th, Margo will have a “modified radical mastectomy” which, as we understand it, is taking off the left breast and most of the lymph nodes in the left armpit area. 

The discussion among the several Mayo doctors including Lymph Clinic, Oncology, Dermatology and Surgery is what to do to keep Margo’s arm and hand from getting worse.  

Sometime early last September, it began swelling up and getting hard—what is called “woody.”  At first the thought was it may have been from an MRI where the vein was missed and the contrast agent, gadolinium, was injected into the arm—a reaction to that.  However, after some tests including biopsies of both arms—one normal and one swollen, both had the same levels of gadolinium, sort of ruling that out. 

Margo is the third woman going through this kind of chemo (out of probably dozens to hundreds) who have had an arm and hand reaction of this kind.  So, not only do the doctors want to fix the arm, but they are want to figure out what made this quite problematic reaction occur in the 3 cases.  That is the research side of things.

The treatment side is what to do with the hand and arm.  After 3 weeks of massage and light therapy as well as nearly 6 months of tight elastic wrapping on 24 hours a day, the arm is not really swollen much bigger than normal, although the hand still is, but the arm is still “woody.”  That means it feels very hard and tight under the skin.

As this is likely the lymph system with all of its nodes not performing right along with a possible tissue change – called scleroderma--, the question is will removing the lymph nodes on that side make the problem even worse, and should that influence the surgery (take out less nodes).

Since Margo had a lymph node biopsied back in July—and if was found to have some cancer cells, the normal procedure is to take them all out as the cancer had spread to at least the one of them that was checked, and a few others were somewhat swollen.  Balancing that is that after chemo, the breast tumor and the lymph nodes all looked like the cancer had disappeared, so maybe lymph node sparing surgery would be better for the arm.

Each medical area worries about the problems they deal with, and then with a flurry of emails and discussions try to figure out the best compromise for the patient—bringing into the discussion their own experience, the latest research findings, and their own biases.  Then they present the different options to the patient. 

However, presenting that to the patient is somewhat difficult as most patients, including Margo don’t quite understand the special words used.  So, in an attempt to help out, I spent a lot of time reading up on everything to do with the surgery, cancer, lymph system, and so on.  I also can draw on 25 years having worked at Mayo with doctors so I don’t feel intimidated to stop them and say “I don’t understand what you just said.”   I think doctors do think they are talking on the patient level when at times they are not—and too many patients are too shy to speak up and say they don’t know what is happening.

In the end, the patient is given the choice of treatment options, with recommendations from the doctors.   Most folks are quite willing to accept the recommendations as they hope the doctors do know what they are doing!
Margo’s choice, is to slightly modified from the original plan.   As the surgery is started, some tissue from lymph nodes and breast (as I understand it) are sent to be checked under the microscope immediately to see if there are cancer cells obviously present.  If there are, then the normal “take them all” lymph node surgery proceeds; if not, some of the lymph nodes that are normal looking may be spared in the hopes that the arm will drain better. 

Margo said, “I would rather have the surgery take them and deal with the arm and hand later than to have the cancer come back because we left some questionable nodes.”  So that is the direction from us.

I think the most reassuring part of the whole process is to know that a half dozen doctors with different specialties discussed Margo’s special problems and thought a great deal about what to do and worried about doing the right thing enough to have spent time reading up on current research papers, and consulting widely and even, as Dr. Haddad, the oncologist said, lost sleep over it.   Not only that, they reported the arm problem to the Mayo area that looks into why things go wrong, thus making sure Mayo folks will be trying to figure out how to prevent this from occurring with future patients—the quality control aspect of medicine.

Finally, to show that everyone who treats the patient at Mayo gets to be included in the process, not just folks with MD after their names,  Jennifer, Margo’s physical therapist who has been massaging and wrapping her arm trying to bring the swelling down sent an email to the surgeon asking if the PT folks could follow on with the PT treatments after surgery (wrapping it while she is still in the hospital) and doing some special range of motion on her that normally wouldn’t be done for a week or so afterwards. The surgeon told us about the request and said that not only could they do it for Margo, but she had another person who could benefit from this too.    

Another interesting fact:  Most of Margo’s doctors including the oncologist, surgeon and Lymphedema person are women.   Back when I started working at Mayo in 1980, there were few women doctors, and very very rarely a woman surgeon.   In my own case, my family doctor, Myasthenia neurologist and endocrinologist are all women.   They are all great.  

Sunday, March 3, 2013

River Road

Deer crossing the St Croix just south of Spangler's Bay (north of St Croix Falls)

Open water south of Nevers Dam.  Six trumpeter swans flew up from here.

The cabin had a break in last week.  Some small items were taken, but not much of value is left there, so not much to take. 
Was at the cabin Wed-Saturday this week.  Winter is still in full force, but the longer days give a promise of spring to come.   Thursday night hosted a maple syrup meeting at the Luck museum.   Fun to talk with other syrup producers all eager to get started this year and hopeful for a much better season than last.
   Friday went to classic movie night at the Luck Museum and watched "Fly Away Home."    The first Friday night of each winter month is classic movie night -- free popcorn and free movie. 
   Today, back in MN, we drove to Wabasha on the Mississippi to watch the bald eagles and visit the eagle center where many special events were happening with lots of folks and a few eagles.  
   Medical visits this week for Margo.  Thursday is the meeting of the local history societies at Luck and Friday the writer's group at Grantsburg.  Be both places this week. 
    Margo is feeling much better as she recovers from chemo. She has surgery March 11th at Mayo.  
    Monday the 4th is our 41st anniversary!   Doesn't seem like much over 38 years.