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B2Rplan

Bay To Remember

We arrived at Bay To Remember on December 2, 2013.

This pleasant lakeshore house will be our home for the next two months.  We are just south of the city of Geneva, New York, on the west side of Lake Seneca.  This is the central of New York’s Finger Lakes.  You are thus looking east…

We are here for the duration of OWLeS, Ontario Winter Lake-effect Systems experiment.  Funded by the National Science Foundation, this particular experiment involves 9 different universities and the Center for Severe Weather Research.  The CSWR is based in, oh delight, Boulder, Colorado — my natal city.

Elsewhere the experiment will be covered; in fact, the amount of coverage is projected to be astounding!  such are successful field experiments.  So I’m not going to say much about it, other than to point you to its website:  http://www-das.uwyo.edu/~geerts/owles/

This is what you see when you walk in the front door.  The table in the right rear is the computer table, and the man in the chair is George, my husband.  He doesn’t really have a title for the experiment, although “Flight Scientist” is as good as any.

When we first knew the experiment was funded, I was given the task of finding lodging for us.  George gave me a number: per diem multiplied; this was my maximum, not to exceed.  It was in the thousands, but single digit eh?!  I took about three quarters of it and started by looking at hotels.  Duh.  That did not work.  A hotel for 2 months??  Not!  Next, I tried apartments.  The problem here was all the leases were year leases.  It was whilst talking to a real estate agent that I first heard the magic word, VRBO.

Vacation Rental By Owner.

http://www.vrbo.com/vacation-rentals/usa/new-york

I had only recently read about VRBOs in TIME magazine.  It was like a door opening.  With a bit of trust and lot of imagination, (and my background of reading Architectural Digest for fun), my dreams took root, then started walking, trotting, galloping and then flying!!

I used location and price, as well as criteria of how many bedrooms and baths.  Ideally I wanted two bathrooms.  Sounds extravagant for two people (a married couple no less!) but I know these two people.  After 25 years, our bladders are on exactly the same schedule.  I also wanted a work space for my tack shop.

What made it all work, what made VRBOs such a good deal for us, was the simple fact that we were staying over the winter.  This is not merely shoulder season, this is the ultimate OFF season!  The frightful prices were for summer tourists, weekends and vacation weeks  They dropped to very reasonable lows along with the temperature.

I had narrowed my choices down to three when I got a phone call.  The landlady for this particular property wanted to know if I had any questions!!  I was somewhat flabbergasted.  I had only just begun to dream… I thought I couldn’t afford the place.  She asked how much we had in mind.  I spluttered and hawed, finally mentioning a range which matched my three-quarters.  And of all things, she promptly made an offer right in the middle of my range!

As though I could name my own price!  I bit.

The final kicker was my asking whether the Lake would freeze, and she digging up the weather bouy which rides there.  She emailed me the link. Such devotion and courting of business was beyond my own capacity and certainly not possible to resist.  The other two properties, I should say, took forever to get back to me (one of them didn’t reply until after we’d mailed our down payment).  She was prepared and she was just plain nice, and that has been the case ever since.

So here’s the basement, with its second flat screen TV, pool table, fooseball table and cushy couches.  There’s a bookcase to the right of the pool table, behind the couch.  And this, taa-daa, is my work space corner.  The TSII has set up in some interesting places over the years — field experiment tents, ships, apartments — and this one has got to be one of the fanciest.  The house even has a hot tub.

I confess that we have used such a thing only once before.  I’m the sort for whom a soak in the tub is sufficient.

And so the wheel turns.  A week has passed since we arrived.  The plan is to drive down to State College once a week and take care of the mail, the plants and the recyclables, and bring back anything we need.  I’ve made the drive once: 193 miles one way.  The list expands:  my own cheese grater, a particular book, chip clips, a certain pattern for a saddle.  As time goes by we adapt to our new home more and more, by purchase or fetch, or just by getting used to things.  Bad: can’t see out the front door very well.  Good:  sound of waves at night.  Bad:  no piano  (I went on campus and used a practice piano).  Good:  sense of spaciousness, great carpet for excercise, and fabulous movies.  I’ve already finished one puzzle.

Tackmaking has begun again, and that is always a good sign.  Geo’s shingles are healing well, and we are looking forward to some good storms to measure this very week.

Stay in touch.

RG2

Ruth at The Forum

On November 19, 2013, Ruth moved to her new digs.

At this distance in time, 3 weeks after the move, and with no new bad news following, it seems to have been not too hard… not as hard as the first time.  But who can really judge the difficulty?  If I found it hard, what about Ruth…?

 

I started the hunt for a Skilled Nursing / Long Term Care place with the five places we had visited back in May and June.  Of them, Benton and Brighton were out and Freedom Pointe and Park Meadows did not provide Skilled Nursing.  (I am told, I tell you, “about 5 % of residents need it.”)  This left Brookdale.  Research and recommendations from friends provided two others, The Forum and Rosehill.

 

I started the hunt in early November.  On the 11th I had narrowed it down to the three.  We knew there was space at The Forum and they had already called and told us Ruth “would be accepted in nursing.”  Rosehill was the furthest away from Benton and priced higher than The Forum.  I didn’t yet know the prices for  Brookdale.  I had asked them to send a Personal Assessor to Benton.  They promised Monday; in the event, she didn’t go til Thursday.  The conclusion was as expected: Ruth would do better in the social environment of Long Term Care.

One of the things I’ve learned this year is the tremendous spread of definitions in the terminology of the aged.  From state to state and institution to institution, it varies as wildly as harnessmaking terms varied one hundred years ago.

That day, Veterans Day, was a Monday.  George had given me an ultimatum:  Today we decide, commit.  This, because we were leaving on November 15th, Friday, for our long-planned trip back to Kansas (the fifth trip to KS of this year, as it happens).  He left for work and I swung into action, finally obtaining Brookdale’s prices, something I should have obtained a week ago.  Well, they were a third again higher than The Forum.  As I talked with a marketing agent from The Forum, a very nice young lady named Newell, I found myself falling in love.  Time after time, point after point, not a sudden moment but a long series of little weights landing on me and piling up.  She had worked at Overland Park Place as a receptionist.  “Nobody leaves The Forum” (this was the answer to our most-desperate but most-unable-to-ask question, would we have to move her AGAIN).  She knew residents who had left O.P.P. to come to The Forum:  “There was a tradition of them choosing it.”  Biggest risk was ‘elopement’ or flight risk.  In-house hospice.  They had two semi-private suites open.  Then the trigger:  “I know that name!  I know her, Ruth Young…”  When I heard that, I made my decision.

And so we committed to The Forum.

For the first time since 2002, Ruth would have a roommate.  This condition was supposed to give residents “more of a reason to live.”  Not since the passing of Ross, George’s father, had she had any loss of personal space.  But also, by this time Ruth could barely propel herself around.  The walker was last used in late October.

 

 

I believe this person is related to Mary Peter.  Mary herself is a very nice person.  She travels with an oxygen tank.

 

 

 

 

 

Two different views of the television on the dresser.  For at least a year we’d been able to remove TV from Ruth’s life.  Now this decision was taken out of our hands.

At least I was able to recycle some of the picture-hanging hardware, and put up a semblance of familiar pictures.  I couldn’t find a hammer so used a shoe-heel to drive in the nails.

Back at Benton House, we were scrambling to render down a large two-room apartment into this semi-private suite.  The closet is a particularly perfect example.  It is 42 inches across.  Somewhere in there are three garments I had taken back to Pennsylvania to dry-clean and then transported back to Kansas for her.

She chose books to take with her, and magazines.   They are in the dresser whose corner just shows in this picture (see two shots above).  The other dresser, under the TV, holds underwear and t-shirts.

 

You do the best you can.

Yes, there is a window.  You have to walk around the curtain for it, but here it is.  The bed in this view is Mary’s.  The closet door hard on right is Ruth’s closet.

The view itself is of the parking area and front entry arcade (red cobblebrick) of this part of The Forum.

There are two halves to The Forum.  The northern half, closer to 95th Street, deals with Independent Living and Assisted Living.  (You can see its three floors through the window.)  On the satellite view, it is the large X-shaped building.  Below it, to the south, is a V-shaped echo.  This deals with Rehabilitation, Long Term Care and Skilled Nursing, and is called The Health Center.

Ruth’s room is on the second floor.

The bathroom: a far cry from what she was dealt over at Benton House.  From a practical standpoint, it meant most of the supplies we had gleaned and chosen for her bathroom became superfluous.  Some were saved and taken home to PA; some were given away; a bare handful travelled with her;  and the rest, about 50%, were tossed.

This ratio is not so far off of the entire apartment, except for the furniture.  I have to slip in here that I am quite pleased with how the furniture was dispersed.  Family, friends and Ruth’s long-recommended favorite charity, Cross Lines, got it all.

Here you have a view of the common area, or lobby, of the second floor of the Health Center at The Forum.  The elevator is to your right.  The hall behind Ruth and George is the rehab hall.  Her own hall is to the left.

For some reason I love this shot.  Indeed, we went through like a whirlwind.

 

 

 

 

 

 

 

This is her hall.  He’s headed back out to the common area after having emerged from her room.

 

 

This shows what’s behind the hearth: the rest of the common area.  Lo and behold, a great flat screen!  and lo and behold some more, a spinet piano.  Long and far cry from the Pearl River baby grand at Benton, at least it IS a piano!!  I found out anyone could play it… but rarely did such a thing happen.  Perhaps because of advanced age, (high turnover?) perhaps because none of the staff knew how, I was told that if a piano player turned up it trumped all other forms of entertainment by default.  Naturally, then, I had to give it a try.

For a few moments there, I was the prime entertainment and source of music on the floor.  Some of my audience was still alive, and appreciated the impromptu concert.

Long may Ruth be numbered among them.

November 18  2012

Herein Lies A Tail – 6: July 2012 to August 2013

It’s more than time I updated this chronicle.  An entire year has gone by.  You can guess that my condition has just gotten better and better.  I no longer think of these adventures every day.  Yes, I am a survivor and will always be a survivor; my hair itself is one of my biggest reminders.  But I like to remind myself that this, this very life of mine so precious yet so taken for granted, is what my physicians, nurses and medical professionals were working for and towards.

Let’s start out with early July.

July 1 2012

I know my last installment stopped after this, so there is a bit of overlap, but this cutie deserves a spot.

Next, several late Julys.  This is the first serious braidwork to reappear.

July 27 2012

July 27 2012

July 31 2012

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Here are the first pigtails to appear.  We will see this approach again later.  At this time I was still using the big barrettes to keep the hair out of my face.  The scrunchies are getting a good workout — an excellent investment.  I used them until they stretched out and went limp.

September 4 2012

This beauty shows, among other things, that picture-taking has slowed from every month to about every quarter.  It also shows what we suspected but didn’t know for sure until now:  the curl is only on the ends.  It wasn’t permanent.  The older, straighter hair is growing back in, returning.   The original is re-establishing itself.  I shall have long straight hair again, but always with a curly tail end:  So long as I don’t cut it.

September 4 2012

And I don’t intend to.

I am starting to think of this mane as like a unicorn’s tail, or maybe a lion’s.

September 13 2012

Odd to think that it’s long enough for pigtails, but not for braiding.  This unusual picture makes it look shorter than it really is.  What’s going on is that I’ve made 2 pigtails and then fastened them together behind, with a third color which can’t be seen.

 

Binding these curly ends is rather hard.

September 24 2012

Yet another shot on the deck in the fall of 2012.  We are making up for lost time with these hair photos.  The shape of things to come is clear.  My husband claims that the curly ends are redder than the top, that the straighter hair is duller brown and has more white.  In other words he thinks the curls are ‘young’ hair, and the now-younger, straighter stuff is ‘old,’ that is, contemporary with my age,…. early 50s.

October 18 2012

Here’s an October, proving that the pattern of shooting me every month at least stuck for a while.

The next series of shots was taken way up on State Gamelands on the Allegheny Plateau.  I haven’t cropped them, so you can see the country around me.  We call it “Three Dog” strip mine (relcaimed), but that day we called it “Four Dog” because we’d found an extra lobe of land that hadn’t been there before.  Such a good deal for the birders and hikers.  I was so exhilarated to be outside in the wild again…

November 18 2012

November 18 2012

 

 

 

 

 

 

 

 

 

 

 

 

 

November 18 2012

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You have to admit:  ’tis better than the great elk’s crown, to have a mane like this again…

November 2012

 

 

This is about the last time the hair can be free of any tie or hold.  It is getting long enough to be a serious entanglement in clothes, pack, everything.

 

Oh bliss.

January 13 2013

 

 

 

 

Now it’s 2013.  I have made it to the ballyhooed three year mark, although in actual count it’s only 2 years 11 months since my treatments started and 2 years 5 months since they stopped.  The photo is reddish because, being winter, everybody’s indoors.  Clearer and clearer is the fact that the ends are curly and the rest is going to be as straight as old.

January 13 2013

Something to smile about!!

 

January 13 2013

Debut the ponytail.  For the next year, at least (certainly as of this writing), I will be wearing the ponytail.  As opposed to pigtails, barrettes, braids or headbands.  All these methods, except for braiding, have been passed by.

 

 

 

 

 

February 2 2013

This shot, taken in early February of this year (2013) shows a fantastic new style, the partial ponytail.  This method of hair restraint utilizes the same hairbands as pigtails and ponytails but leaves a softening layer of loose hair around the neck, which also keeps the neck warm.  🙂  If brushed straight back over the forehead, it gives a totally different look again — something I love.  Movie star anyone!?  As it is I’m reminded of childhood friend Chris Pilz.  Forgive me Chris:  I love this hair!

February 2 2013

This would be the last shot taken of my hair for more than 5 months.  Documenting the mane simply slid down the list and landed in last place.  Far more important chores awaited us.  My Mother-in-Law, Ruth Young (whose birthday is February 2) commenced to slide herself down the slippery slope of very old age dementia.  We lost telephone contact in December, email contact in March, and letters in August.  Interim services carried the situation for about 6 months, from February to July 2013.  We placed her in Assisted Living on July 10.  As of this writing she is in Benton House, Prairie Village (Kansas City), a very nice place — and one that had her approval at the time.  Now her fate rests in the hands of God.  To have such a family disruption, lasting more than 8 months — just about the length of my treatments!! — descend upon us within three years of cancer was, ummm, devastating and challenging.  To be rolled in the rock-tumbler of life…again…  And this time, there was not a career to look forward to, but only a duty to be bourne.  She has no other heirs and her husband died in 2002, and George’s work schedule is such that most of the administration fell into my hands.  Never having been a mother myself, and never having had to deal with end-of-life or caregiving issues before, it was a steep learning curve for us.

All this at the distance of a thousand miles — central Pennsylvania to Kansas City — well… just imagine it…  it takes 2 days to drive one way,…

My phrase:  Having my nose rubbed in my own mortality, twice.

July 28 2013

When we finally got around to shooting my hair again, 5 months had passed.  Verily now I had a Unicorn’s tail of a mane.  This picture shows the color variations rather well.

July 28 2013

 

 

 

 

 

 

 

 

 

 

 

This seems to be the classic pose.  Remember where I started?  Shot from the back on the back deck!!  In less than 3 years, I have a mane again.  I said I could wait for it to grow again, and lo, it has.  I estimate it will take about 7 years to achieve the great length it had before, although I know it will never really be the same.  At least for now, I’m not planning on trimming or cutting.  The curls are hard to make into a tassel, but that’s what I want, so that’s what I have:  tubular tassels.  It is a unique mane.  I enjoy the curls more and more — they’re fun, beautiful and lively — without wanting to go back to all-over short curls.  Yes, I love it.

 

August 25 2013

My message, then, to all you survivors out there:  It  probably won’t be as bad as you thought it would be, so concentrate on what’s good.  Let go of your terrors, let God carry them — He’s so much better at it than you! — drain them off, by any method that works for you.  (For me it’s journaling and writing, talking with friends, and occasionally crying.)  Enjoy what you have, even more fully than you thought you could.  Let go of extreme seriousness, without losing knowledge gained.  It will all work out better than you anticipated:  Such are the gifts of One Who loves us.

And I’d be willing to listen, if you need a shoulder to cry on.

20120613

Herein Lies a Tail – 5: January to July 2012

What a difference six months makes!!  I know I’ve been dreadfully behind in posting pictures.  As my friend Katie Richards says, this is less and less a cancer blog and more and more about just plain life.  Let me tell you, it is so unspeakably wonderful to be normal… to be back to business.  I apologize for the lack.  I want to credit my dear husband George for NOT forgetting to try and take pictures each month, attempting to catch the many versions of hairdo as they went by.  For there have been a lot of variations, and each seems to have lasted only a short time, until some new way of holding it out of my face evolved.  We are missing only one month, May.

Let’s start with a January shot. This was taken on the 14th.  There still is no real part, but I’m working on it.

 

 

 

 

 

 

This one was taken in February.  It is important as one of the early documentations of using clips and barrettes.  I liked the little plastic flowers (haven’t I made progress!!  a lifetime of never bothering with such things!)  until they broke off their clips, victims of sheer use.

 

The pink headband here is token of my increasing efforts.  Taken February 9th, I had clearly established a part and was using a combination of barrettes and headband to keep the sides out of my face.  These are the medium size barrettes.

This side shot shows the dining room table.   Look how long the hair is getting: down into my collar at last!  February 19th.

 

Below:  Again February 19th, I’m particularly pleased with the expression, if not the control of the hair.  I submit this in my Gallery of Impersonations:  Isak Dinesen / Karen Blixen [1885-1962], one of my favorite authors.  She even has the left slanted mouth.

 

March was one of the last months to see unbound hair.  From now on out it would be held back in some form or fashion.  March 17th.

This shows how long it’s getting, and the curious form:  the hair grows straighter near the scalp, but swirls into turbulence at the ends.  Is the weight pulling out the curls?  Or is it growing in straighter as time passes?   I honestly cannot tell.

 

 

 

Same day, March 17.  Working indoors, I always squint when taken out for pictures — it is so bright out there!!!

 

The hair is now long enough to have to be pulled out from under shirt collars every day — what I call ‘normal’ — hooray!!

 

April 14.

This one will be the only shot for the next two months, and it shows my expanding range of efforts.  The device is a plastic headband, and — truth — I only wore it for this one photo session.  I couldn’t wear my hat with it, which was a gamestopper as far as I’m concerned.  The reason there aren’t many May shots is because we were travelling.  We went from PA to KS and MO and CO, then WY for a weekend, and then back again!!  In fact there were a lot of pictures taken during these 5 weeks, but they were rarely of me, unless you want to count the back view while canoeing.

 

Isn’t this a beauty??!!  It was taken June 13, 2012,  in front of Overland Park Place in Kansas City, where my mother-in-law lives.  It shows the heavy-duty barrettes I turned to when the thickness and sheer volume of the hair got to be too much for mere clips.  It also shows, beautifully, the drawbacks to them: a stray lock or strand will escape and get into my eyes, no matter what I do.

July 27, right after BreyerFest (during which the last few people who didn’t know, such as Donna Chaney from England, heard the story of my hair).  In my Gallery this has to be “starlet” calibre.  At long long last, I am braiding again…!!  Things have come round full circle… This whole adventure has shown me how much better to wear braids on the head…  The tiny rubber band seen behind the ear is the smallest size in my collection of hair holders.  The heavyduty barrettes are there too.  No one taught me how to French braid; I am experimenting on my own.  I bought bobby pins for the first time in my life after this.

 

 

 

July 31 and so very recent.  It’s long enough now I can do pigtails if not a ponytail.  (Didn’t I go through this phase in gradeschool?!)   It really is too short to braid still, but I can throw my head around and feel how it swings against my neck.  This is freedom…

 

 

July 31.  And so we’re up to the present.  The heavy duty barrettes are doing their job, although their paint has worn off.  In this shot you can imagine what is to come:  smooth over the top with a waterfall of curls behind.  As if you needed to ask, George loves it.  Some people may think this is long, but you don’t know long…

 

On the actual treatment front, I have successfully passed a number of milestones, such as the one-year checkup since the end of treatment (Feb. 2011).  The next hurdle is the two-year CT scan, scheduled for late August 2012.  We shall see…  I would like to encourage fellow survivors to hang in there and tell their stories.   It’s not an easy path, but you can get through.

September 27  2011

Herein Lies a Tail – 4: September to December 2011

Welcome to Sue’s continuing gallery of “Portraits after cancer.”   If you want the full story, visit the Intro and the other “Herein Lies a Tail” posts in order.  The interval between shots is getting a little longer now, but I still intend to keep posting.
 

September 27 2011

October 4 2011

November 21 2011

December 8 2011

 

September 5, 2011

Herein Lies a Tail – 3: July to September 2011

On this post my faithful readers will find a pretty complete portrait gallery of the evolution of the mane of Sue, proving that there is life after cancer. I will also continue the “Career As An Imposter” because there are some amazing shots in here. I seem to have gone through a lot of famous figures. There is no better example than this first picture. John Denver anyone??!

July 26, 2011, taken by GSY

 

 

 

 

 

 

 

 

 

Or how about this one? Does it remind you of President Clinton? It does me…

August 2 2011

 

 

 

 

 

 

 

 

 

 

 

 

 

These next two shots were the first I started sending out to my parents. I really should have started earlier, but, well, I was shy. A lifetime of rarely having my picture taken needed to be overcome.

August 3 2011

August 3 2011

August 3 2011

 

 

 

 

 

 

 

 

 

I’m putting this one in for the sake of completeness and to show that I’m not always smiling.

August 13 2011

 

 

 

 

 

 

 

 

George thinks this one should be labelled “Stan Laurel and Oliver Hardy.” I cannot object.  The coloring can be explained by the fact it was taken at sunset.

August 19 2011

 

 

This one beautifully demonstrates the “wings” over the temples. These white ends are some of those descended from the “Second Growth.” I happen to love this color and how it’s all turning out. And how about this fellow on the right? Captain, no, Admiral James T. Kirk –??!?

August 29 2011

September 5  2011

September 5 2011

 

 

 

 

 

 

 

 

This next portrait, taken in late September, is my favorite. I call it my Press Release picture. For many relatives it was their first good glimpse of me after the end of treatment. The hair is long enough for a central part to be needed and established.  It is at this point, with the curls so clearly handsome, that several people (you know who you are) started asking why I didn’t want to keep it this way. “So long buried!!” exclaims one. “You don’t need that old rope,” says another. Note that these comments were both from old men, whose ideal of female beauty was formed in the 40s. While I acknowledge the point — short hair is gorgeous on me, to my surprise — against them I note that every one of my model horse friends has assumed I’d be growing it out again. What can I say?  I do intend to grow it out. I made a promise to myself, and that promise helped me get through the whole adventure. Everybody can go whole-hog on a few things in their life; this is mine.

September 22 2011

See Tail – 4 for the next chapter.

201103.04aDL

Herein Lies a Tail – 2: Oct 2010 to July 2011

One of the most incredibly hilarious happenings in the whole course of my cancer treatments was the timing of the Pennsylvania Department of Transportation Driver and Vehicle Services.  We get our licenses renewed every four years.  Guess who got to renew in the spring of 2011?!?

In the long dark teatime of that winter, when I was relying entirely on feel as to what was going on up there, and wearing bandannas and scarves in many inventive ways, this shot would come the closest to the classic ‘bald’ picture. Due to the extrordinary understanding of the PennDOT clerk I was kindly allowed to “Think Pink” instead.

For the next 4 years, I’d get to explain what was going on.

My radiology treatments, all to the pelvic area, ended on November 21, 2010.  I got a graduation certificate!!  My third chemo occurred on December 13.  I had become an expert on living a 21 day cycle; the higher the number of the day, the better and more normal I would feel.  A week after the 13th, the bit between our teeth, we drove to the Outer Banks of North Carolina for our Christmas vacation.  I found out I could hike 5 miles.  It was wonderful.

My fourth chemo was on January 3, 2011.  My fifth was on January 24th.  I had been fearing  January for it was my only month with 2 treatments; chemo’s effects are cumulative, and I thought everything would just get worse and worse.  True enough, we had a scare in January when I thought I had caught cold, the one thing we were striving to avoid above all else.  The draconian measures to avoid catching cold were unbelieveable (no fresh fruit or vegetables for fear of contamination, no crowd contact of any sort — not a restaurant, not a store (grocery shopping meant a lot of dodging and holding my breath, black looks at anyone who coughed) — and no visitors without a mask) and could not have worked without a willing partner!  Yet looking back, I think that ‘cold’ was merely me experiencing chemo on a deeper level.  Smells and tastes had changed to where I did not recognize them.  The nurses were kind and supplied antibiotics.  January turned out to be a far more relaxing month than any before —  by now I knew the ropes.  In the end we accomplished the impossible: I didn’t catch cold until sometime in May, — and beat that one normally.

Because of the two months between my second and third chemos, my hair had a chance to start growing again.  What we called the “Second Growth” started out pure white and fine.  The remaining chemos knocked out the Old Growth but the second growth never really stopped; it just thinned.  I am basing these statements on my beloved’s reports, he who thought I looked wonderful no matter the state of my scalp.  There is a quote from C. S. Lewis’ 1946 book That Hideous Strength which applies:

“Isn’t that just like a man!” exclaimed Mrs. Dimble.  “There’s not a mirror in the room.”  “I don’t believe we were meant to see ourselves,” said Jane.  “He said something about being mirrors enough to see [one] another.”

How humbling, how precious, to so trust another that their very eyes become yours.  Yet this was only one instance of a galaxy of trust between us.  Great tragedies and stresses either bind you closer or push you apart.  I was very lucky.

My last chemo was on February 14, 2011.  The joke went round and made the nurse laugh:  Most girls get diamonds for Valentine’s but I was getting platinum. This was a reference to Carboplatin which is made with platinum.  I could by then claim to have been poisoned, scalped and nuked.  In March we took our Spring Break vacation on the beaches of Maryland and Virginia, and it was on that trip I saw a biker couple wearing rolled-up bandannas as headbands.  Great idea!!  promptly borrowed.  Scarf-wearing tech was my collection love by then, yet how soon the situation changed.  Although it was hard to detect the precise start of regrowth, I fixed on mid-March.  I remember a hike deep in the brush of Bombay Hook where, safe from all prying eyes, I took off my headcoverings and let the breeze cross me bare.  George said later  “The look on yor face!”  It was a funny thing but I had gotten used to going about with no tail in the house; yet upon hiking and birding outdoors, I seriously needed the Tail.  It gave me balance.  At this point I’d rebraided the leather several times and finally put a new shorter tassel on it, having plenty of raw material.

April was noteworthy for a journey down to Harrisburg, the capital (2 hours one way) to visit Dr P. I’d had a PET scan March 28. Typically, I did not find out the results until 2 weeks later — and had to drive 2 hours to get there! But this just made seeing him all the more rewarding. Dr P. gave us a clean bill of health. The trip back up was one glorious, ringing sojourn of discovery and specialness: the first eating out in a public restaurant (previously I’d had to settle for takeout) was just one of the freedoms restored. Even the salad sort of shimmered. No clandestine lovers could ever have experienced eating out the way we did that day. I shall always remember it: it was like getting out of jail.

For various reasons our 2011 Spring vacation was going to be not 3 weeks but 6, and touch Colorado, WY, NE and KS.  We would stay with my parents in Boulder, CO.  It was here, in early May, that I looked in the mirror again; and picture-taking entered my life again.  For purposes of these posts it has not stopped!!  Fair warning oh readers!  From here on out I resort to a refrain that sums up my hair situation:  No one counted on the curls.

In Boulder, taken by Mom (Jeanne E Bensema)

At the bench in Boulder, May 27 2011

 

 

 

 

 

 

This shot, taken by my mother in the basement of the family home, shows me at my temporary tack bench. This place, in space if not in time, was where I began my tiny tack shop; my first pieces of tack were made near this very spot, on a card table, in the 1970s.

Jennifer and Sue

Jennifer Buxton and Sue, May 28 2011

One of the most wonderful coincidences of being in Boulder during May was that I had a chance to go to the Springamathing on May 28. This was a Stone-sponsored model horse show in Golden, about an hour south of Boulder CO. I couldn’t miss it!!  I had to deliver a hackamore to Teresa; it was my donation to the 2011 NAN Auction.  Jennifer Buxton, Teresa Buzzell, Karen Gerhardt and many others would be there. I saw Christie Partee, Jane Schneider, Sheila Bishop, Tiffany Purdy and Jennifer Scott as well as others I don’t recall. In a very real sense this was my coming out party. This picture, taken by Teresa, turned out to be the only one ever taken of me that showed both the Tail and my developing forelock.  To my amazement and secret delight, no one said a word about my hair… bless em.

 

At Boulder, May 30 2011, taken by J E Bensema

 

 

 

 

 

 

 

 

 

 

 

 
This is one you must meet: my life’s companion, George Young. If it weren’t for him, this blog and indeed me would not exist. Or if we did, it would be under far less congenial circumstances. He made everything possible; I owe him nothing less than my life.

At Boulder, taken June 9, 2011 by J E Bensema

 

 

Back home in PA, July 24, 2011, taken by GSY

The next series of pictures can easily be titled “My career as impersonator.” I’m not quite sure who I look like in the green t-shirt, but it isn’t me.

 

By now, July 2011, BreyerFest had come and gone and I was flush with success.  I had a wonderful time there, completely making up for having missed it the year before. I wore a bandanna without the Tail, as near as I can remember; but I was so happy just to be there that it didn’t really matter.

 

 

Go to Tail – 3 for the next chapter.

Jennifer and Sue

Herein Lies a Tail – 1: Up to Oct 2010

[Dec 2011]  I have struggled over how to tell these tales, and while I’m struggling they keep evolving.  I keep a diary in 200-page notebooks; each Notebook usually lasts about a year.  But for the 7 months of my cancer treatments I went through three Notebooks.  This blog is not, at least not for now, going to be a transcription; I can remember it all quite well enough!  This blog is going to based on pictures of me, something my former life is amazing short on. If you want to know “what Sue looks like now,” then go to the most recent post; I will be trying to keep up to date. But if you want to know the larger story… what happened and when… start here.

NAN 2004

NAN 2004

This picture was taken at North American Nationals (NAN) July 2004 by fellow model horse collector and performance shower Danielle Miller. My Walnut Woodgrain Stone Arab, named Solis, had just won Champion Stone Light Breed of Unrealistic Color! Believe it or not, this was and is my only NAN Champion — my only gold cookie won solely by myself. This shot shows “Sue as of old.” At this time my hair had not been cut since 1979.

 

Between this and the next series of pictures, many things happened. In May of 2010 I had my endometrial biopsy (IF YOU BLEED MORE THAN 10 DAYS SEE YOUR GYNOCOLOGIST); on June 7 I had my first diagnosis, Stage I endometrial adenocarcinoma.  “It’s a puppy, you don’t need chemo, you don’t need radiation, Just let me do a hysterectomy and all will be well.”  [Endometrium = lining of the uterus.]  On July 13, I had a hysterectomy (thus busting my perfect BreyerFest attendance record); on July 16, the day I left the hospital, the pathology report came, and with it my second diagnosis.  My beloved gynocologist said, “I am shocked.”  Three of 15 pelvic lymph nodes sampled were cancerous; Stage IIIC.  Not a puppy.

No one knows how it escaped. An autopsy of the tumor block showed a penetration of one quarter through the uterine wall; even halfway is still considered safe against cancer escaping.  The odds of this happening were quoted as one in a hundred.  I never gamble; but now I begin to understand gambling.

On August 4 2010 we met with my radiologist for the first time (fortunately, he looked very much like my father). This was the first time I heard the word ‘chemotherapy’ applied to me.  Even so there was emphasis on “some do, some don’t” [lose their hair].  The most recent research indicated combining chemo with radiation, so once again I was lucky.  (What if we hadn’t sampled enough lymphs?  Rare to do that just a few years ago!)  A trio of doctors, one a nationally-known specialist in uterine cancer (all praise to Dr Podczaski — you are the best! :), customized a ‘sandwich’ plan for me, so called because it sandwiches radiology between doses of chemo.

On August 16 and 17 we met with my chemo doctor; but this time there was no “some don’t.”  The talk was brutal.  Thus began 6 days of terrible horror; my Personal Nadir.  Take away what felt like my right arm:  and I was going to LET them??!  and be GRATEFUL?!?  Many stories came out of these 6 days and I will be linking to them later.

I had 6 days, August 17 through August 23 [2010], to fully comprehend the fact I was going to lose my hair. During those 6 days, on August 19, I went out to the picture-taking spot on the back deck, and my dear husband took a bunch of pictures. This is the spot where I take pictures of most of my tack orders, right before shipment. These views are so often the only way I get to keep part of my work. The shots go into my tack scrapbooks, to be enjoyed for years to come, standing as reference of what I’ve made.

Old growth from the rear

Old growth from the rear

Side view

Old growth from front

Old growth from front

Old growth brushing

Brushing

The frown...

The frown...

I’m including this last frowny one because it seems so prescient, although I wasn’t aware of such a feeling at the time–!

 

My custom sandwich consisted of 2 rounds of chemo 3 weeks apart, followed by 5 or 6 weeks of radiology (it was 6), followed by 4 more chemos 3 weeks apart.  A month of healing was in there after the rads.  My first chemotherapy treatment was August 24.  Drugs used were Paclitaxel and Carboplatin.  The second treatment was September 13.  Radiology began October 11, 2010.

The party line advice for chemo patients with long hair is to “cut it, so you can use it to match the wig.”  I can stand much — far more than I ever dreampt!! — but I could not stand to cut it.  I hadn’t cut it in 30 years; why now? I would let it fall naturally; fortunately this took a long time (something they don’t tell you!), and I was able to adapt to it.  The rate of fall was an exponential decay, of course, but the last hair didn’t fall until February.  The Tail was originally George’s idea but I leapt on it.  I’m not sure when I started making it; it was wearable by late September.  I had many splendid ideas: silver beads, dark glossy leather strands, braided hair.  The first incarnation of the Tail had a very long tassel.  You can see it below with a white band around the tassel.

 

 

We kept on doing activities we loved; physical activity is supposed to benefit chemo patients.  I can attest to that. 🙂

 

 

 

 

Dos Riendas” means “two reins” and refers to the stage in the training of a California hackamore horse when he is under both bosal and bridle. The phrase was perfect.

 

 

 

 

 

My leather Tail was thick and braided, just like a bosal and its horsehair mecate; my Old Growth was slender and light now, very rein-like in comparison. At the time I really liked the extra-long tassel; I found that a little hair can go an amazingly long way to making me feel ‘normal’ again. I was also pleased to be brave enough to be photo’d at all.

 

In August a funny thing happened: I became very interested in collecting bandannas.  The Flame Kerchief, which ultimately accompanied me on all my chemos, was purchased at #1 Cycle Center, a local landmark and mecca for motorcyclists.

 

From my point of view these were the last pictures but one to be taken for a good 7 months.   Around this time, early October, I had stopped looking at myself in the mirror without a headcovering of some sort.  This episode of my life has given me a much deeper understanding of religions that require women to cover their heads.  I would not look facefirst ‘bare’ in a mirror again until, it turned out, early May.

A bit tricky for showering….

Go to the next Post, Tail – 2, for the next chapter. 

Herein Lies a Tail: Intro

This page is dedicated to two classes of readers:  fellow cancer survivors, and those who want to know what Sue looks like now.  For the former, the story will eventually, in time, be long and full and sprout branches.  For the latter, I offer a collection of portraits taken along the way.  Don’t worry, there are NO bald pictures.  Since I am a professional braider, it is my hope that (when I have time!) these two story strands can be united into one tale… and therein lies a very long tail. Read More