twisted life, shattered, my rambling commentary,

Some days, most days lately this dark cloud hangs over our lives..Life has gone downhill and somedays it accelerates.  In June Jerry was diagnosed with return of the lung cancer.  No further treatment could be given.  That suspiciously malignant appearing spot on another lung along with his lung fibrosis made him untreatable, no further surgery could be expected and chemo was now out of question.  The oncologist could not predict but said 6 months to a year.   We accepted the diagnosis,  what choice does one have, with faith and holding hands.  COVID made this a teleconference, zoom with the doctor..

First snowfall October 25

This after his siege of recurring adhesions from the 40 some year ago intestinal surgery.  The adhesions would flare up in his gut unexpectedly, no warnings, no way to prevent and would require hospitalization.  The last time in June meant inserting a permanent gastric drain tube into his stomach that we could drain whenever an episode might flare up...so far that has not happened but enough else has to where he is under hospice care at home and each day goes along,  That is the short of it and I say without reservation that this is sheer hell, unexpected, and nothing we ever could have planned for.  We though we'd have more time.  Jerry feels cheated, there was so much else yet he wanted to do in life.  I am devastated but put on a good front, for him and to keep myself steady.  Deep in my heart I have suspected that someday I would be a widow because Jerry is 7 years older than me.  But with the longevity in his family nothing was anticipated this soon and his overall good health gave us hope that has now shown to be  so false...we really never knew what lurked ahead.

It has been an awful year.  Have lost 3 close friends, one  to suicide as his health was failing and he could not face getting any worse.  A tragic year.. I am learning how to take care of things I never had even considered, so much Jerry did.  Fortunately friends help and I can afford to call professionals for major things like the new humidifier for the furnace.  I have signed up with the same company for annual inspections of the heating, air conditioning, maintenance and change of filter, etc,  all things beyond me.  

We had our first snowfall of winter Sunday.  Fortunately we only had  about under 2 inches, no shoveling required and roads cleared.  But it is too early.  It is like life right now, a long cold spell...I have yet outside chores to finish and somehow it will get done.  But my focus is caring for Jerry.  His world has shrunk to one from his hospital bed which we have in the living room alongside this window so he can look outside.  He can get up into his adjacent chair to sit and make it the few steps to the bathroom and back but that is it.  This has changed so much, so fast just from June.  He has more bad days than good.  We have home health aide help once a week to assist Jerry, gets him bathed and feeling ok. 

I am rambling but there is so much I want to get out and so I will be writing circuitously...but since I no longer have blog followers, my closest readers/friends have all passed away, I can use this space as I best can.  I know I am not the only one who has been on this path,  I know other widows.  But yet it is different for me, there was only us two.  All other family gone, our only son, Steve dead almost 12 years ago now.  Jerry's sister lives in CO with her family.  He has a son in CA , Al calls once a month maybe, obligatory I suppose it makes him feel that he is doing all he can.  He does not listen does not hear does not comprehend anything beyond himself.  He repeats  he is there if I need anything!  Sure, right, and immediately says he doesn't know what he could do.  I agree,  I do not want him flying here, picking up Covid in the airport or on the plane.  I have been so extremely cautious during this covid hell, not only do I not want any of it I cannot risk bringing it o Jerry, it would be game over for sure.  It is all I can do to maintain speaking,  he drove here end of May with his wife, a very sweet person...covid had things closed, they stayed at the local hotel, he was bored and then they were gone.  His efforts were exasperating for me, but he did what he thought was good, never taking time to understand, always the  attitude that he knew, messed up things for me worse than I needed and they were gone.  I was not a good hostess.  This was over Memorial Day  prior to the terminal diagnosis but still Jerry was on a recovery road from hospitalizations. I know he meant well, yet he knows zip about us, about his father, and never asks to listen.. I do not feel he truly cares, he makes a monthly or less effort and with casual phone call, "how's it going? How are you doing?" and yet does not pretend to listen, I do not say much to him, why waste my breath.  If he cared he would be in touch as day by day things happen, change, so someone so out of touch shows nothing.  He lives in self satisfied state of delusion, all is good, happy and says they know what I'm going through yet I know he does not have a clue.  How could he, because Angel's mom died too.  They do not know, they were not sole caretaker 24/7 without anyone...losing a parent is the natural order of the universe, tragic but not unusual...see there I ramble again.  I could write on forever just about this situation but I leave it....I am not the only one who has traveled this path,  I know too many widows.  I have lost too many contemporaries and I am exhausted mostly every day.  

Jerry in June when he still dressed.

Thank God that Jerry's sister, Barb has been here twice from Denver for long stays and to help out,  she has been a real Godsend and relief for me. She could always find something to do, nothing that needed direction nor guidance from me.  I think I am strong, was always used to being in control, and always optimistic and I suppose happy.  Yet today end of October I find my entire attitude has twisted along with this siege of life.   Thankful for my faith that still sustains me although at times my prayers and talks with God center on. "how could You allow this?"  I think I have been through more than enough in one lifetime, but no now it is the ultimate torture.  Jerry no longer gets dressed, will not even put on socks nor allow me to help him, he sits in his undershirt, one far too huge for him and shorts.  This from a man who always wore cowboy boots and jeans..this picture of him holding the certificate from Mayo was in June when he was still getting dressed daily, when he could walk to the kitchen and sat at the table to eat. Today he eats off a tv tray in front of his chair in the living room.  I carry food back and forth.  He has been on oxygen 24/7 for a long time and now along with the machine he needs a supplemental tank to just walk to the bathroom and back and secures it with an oxygen mask along with the tubes. Jerry  has lost over 40 pounds.  Some days he will not eat when he struggles to breathe it wears him out.  l get frustrated,  this is killing me too.  

Watching the love of my life, my husband of 53 years waste away, watching him gasp for breath, doing what I can and yes breaking down more than I would ever have imagined.  That is why I am writing here at last.  To vent frustration ....to release some of what I hold inside.  I am ever thankful for local friends who can do  many things to help,  they are my life savers today.  I am worried about the motor coach, our dream castle on wheels that is parked in its house here,  I have  not had time to figure out an appraisal nor to work online with the American Coach Association to list it for sale.  And sell it I must,  I will never drive it anywhere,  42 foot diesel pusher tag axle, it took us a lifetime to get that upscale and now our dreams for it and life traveling more are shattered.  

A month later than planned

Us, Jerry and me May 5, 2018 at the LaCrosse Symphony

Although this blog is not, nor has it ever been  a means of communication for me,I  will try to keep it somewhat as a frame of reference for all that I have written here in the past.  Way back when I started  this, it was how I thought folks would check in.  I was wrong in that judgement.  The blog was an outlet for my  writings and through it I met  some  great folks, mostly on Sepia Saturday where we could share old photos, histories, etc.  But  those same folks have too migrated to social media, Facebook, where I have found a home and the best way to keep in touch with  friends and family.   For the  wary, nervous, or perhaps technology and change resistant people who do not  use the media,  it is their choice. But then they should not  wonder why they hear not from others.  We can use our smart phones and post in an instant and so Facebook replaces email and old time blogging.  I do not understand that fear and aversion to social media, it is as safe as one  chooses to make it, but so it goes.  There are many things I do not understand and truthfully now, at 74 years, my age, I do not even ponder nor try to understand those others nor their choices.  

I meant to post excerpts from our 2018 annual greeting letter, but truth, I sent few cards and greetings this year.  You will know why as you read,  2018 has not been a good year for  us, never the less, we made it and look ahead, always ahead to far  better times!  

“Hope Smiles from the threshold of the year to come, Whispering ‘it will be happier’…” so wrote Alfred Lord Tennyson.

Me rearranging some of the study,
what else to toss or donate?

"Merry Christmas, 2018   This was our year of trips canceled, hospitalizations, dental and medical treatments, surgeries. Last December I canceled our snowbird reservations due to my sudden tooth ache, an old (30 years?)  root canal went bad, infected, antibiotics healed it but I was reluctant to travel and end up looking for dental care in a strange place with no way to know if it would  return.  I am less adventurous than some of my friends who  urged  me to not cancel but just go! Ended up with oral surgeon for extraction, early February. So, began process of months for healing, consults, dental implant and crown, ending in October.  Fortunately I did not need a bone graft and healed well but those periodic appointments kept us home. I used that time to clear out a lot of clutter, collection of old magazines, etc from the downstairs study.  As much progress as I made  there is always more to do. 

 

Grand daughter Janine and husband
John and their dog

Easter Eve, Jerry ended up in the Emergency Room, severe gut pain,determined it was from adhesions from his former surgery >35 years ago in CA.  The surgeon cleared the adhesion with a probe, avoiding surgery.  That was a 2 week + hospitalization, culminating in canceling our travel plans to CA for grand daughter’s wedding in April.  Very disappointing. 

Jerry had a bout of laryngitis April which led to an ENT specialist treatment, injection to cure a bowed vocal cord.  During that, diagnostic scans revealed a suspicious spot on his upper left lung, almost under collar bone.  Antibiotics followed and all seemed well. He has some lung fibrosis which the pulmonary specialist has been watching for years. Even the Mayo Rochester specialists thought it was an infection, so we were relieved. 

along the hiking trail up Devil's Tower I
made the trek alone and was absolutely blown away 

In August we took a short motor home trip to an RV Rally in Spearfish, SD a wonderful area with many hiking opportunities.  But the altitude and the latent smoke from the Canadian wildfires bothered Jerry with shortness of breath, and coughing. So rather than proceeding on to Denver area as we planned we returned home.  We hope to return to the Spearfish area another time, there is a wonderful RV Resort there and so much to see.  Because Jerry was not feeling right he did not attempt the trail hike up the mountain and back down but waited for me at the Ranger station.  I was glad I did it, but as I said, want to return to the area.   The American Coach Association RV Rally was awesome and we were able to meet interesting fellow RV travelers and renew friendships.  

Just one of the views from the trail

End of September we flew to Arlington, VA for a gathering of my American World War II Orphans Network, ceremonies at Arlington and the WWII Memorial, banquets, and some sightseeing.  We were in DC during the Cavanaugh hearing protestors nonsense which interfered with a few plans.  

WWII Memorial DC, for my father and all the others, my AWON
siblings, we all lost our fathers in WWII

Mid October more diagnosis for Jerry, as Mayo persisted, ultimately led to consults with oncology, potential treatments and surgeon who recommended a lung biopsy. Extensive lab tests disclosed the spot was an elusive cancer that needed to come out.  The surgeon advised he was well and healthy enough for surgery, done November 7, took over 6 hours in 2 phases; removed all the cancer, confined to that sole nodule, upper left lung lobe, all lymph nodes were clear. His son Al flew here from CA for a couple days and surgery and back home day after. Jerry came home to recover Nov 13, my birthday, and had been healing ahead of expectation. He needs oxygen at times, though less now.  Most of his pain is tolerable, achiness from healing 2 ribs that were broken for the surgery as well as cutting through his back muscle and removing a rib. (I asked the surgeon what kind of person would be made from that rib?  He laughed and said, “that’s a good Catholic question!”). They recommended 3 follow up chemo treatments as a precaution lest there be an errant cell. It began December 18 then every 3 weeks. So far, his major bad after effect, extreme fatigue, depression, so his mid-day naps continue.  Oncology Dr believes he can handle it and has many good years yet ahead. (Update January 2019,,,he has decided to forego the remaining 2 chemo doses.  The first treatment  set him back on the healing path, caused him to lose weight and zapped him of energy and enthusiasm.  He declared that was not living but merely existing, and I know that was true.  After our conference with the Oncologist January 7  where she assured him that she could decrease the dose, eliminate the steroids that led to the bottom out chemo crash and she urged him to reconsider over this week.  But although I have tried to persuade him to try again, he is determined no more and will just proceed with healing.  It is not a simple choice, but one  that created ponderance, especially since there  is no evidence of cancer.  He just  cannot bring himself to go through another round of poisoning hell. )  We are fortunate to live here with Mayo care; lesser doctors would have missed this. December 7, he had a  severe spasm cough which ended up with severe rib pain and a trip to the ER.  There more tests to determine all was ok, healing ribs jolted a nerve near the fractures, would require him to take strong narcotic pain meds for a few days.  He’d been getting by with Tylenol.  Now off all stuff again. He is frustrated but I remind him to be thankful.

Here we were at a Czech restaurant in Prague,
November 2015

In November after another unpredictable medical emergency I lost my last closest high school friend from PA, Carlie with whom I'd gone to Europe for the Christmas markets, Danube river cruise, n 2015.  We did not get to PA this year.  She & I talked on the phone weekly and I teased her about ganging up on me with Jerry, told her I was going to come back and move her here and get a 2 for 1 discount at Mayo. She was hospitalized about the same time as Jerry, but hers was massive lung cancer throughout bronchials. No chemo nor surgery possible though she had 9 doses of radiation which did nothing for her.  She died a week before Thanksgiving.  She never married so she was the last of her family.  She was my last lifetime friend whom I could talk to any time.  I was and am heartsick. She was previously healthy and also not a smoker. I considered flying back there but with treacherous weather, flights, and all I had to handle here I did not; she would have understood.  Every day when Jerry was in the hospital, he asked about her. I miss her, she was the last long time link of my life someone I could talk to whenever about whatever. I have lost 3 of my dearest friends, never having had a sister they were my sisters.  Roberta back in CA so long ago, Sandy another CA just a few years back and now Carlie.  We have very few real friends in our lives and I was blessed with a trio, but now all gone. 

Days fly by with follow up doctor appointments, I am the driver.  I am learning to do most all the things, that he has always done other than what we hire like electrician and snow plowing.  During the first light snow dusting, I shoveled our driveway and front steps, took me 90 minutes with one break and a lecture from Jerry on how to do this.  Hah!  Had an electrician replace all the downstairs fluorescents in suspended ceiling with LED’s, previously Jerry had replaced some.  Looks good now all done although he grumbled that he could do it later, I figured just as well get it done and over. We look forward to spring.  I’m really busy but so long as we get good days of sunshine and I can get to the Y to work out life is almost a normal keel. By the end of the day I am done, I’ve never had insomnia and these days I hit the pillow and out. 

 I managed to tackle our 7-foot, artificial Christmas tree out of its box in the corner of the closet and assemble it., decorated it although it has all its own LED white lights so that is easy.  I like the light in these long winter dark days and might leave it up until February or March. When Jerry got up from that nap he could not believe I had done that, he said, “it’s bigger and weighs more than you.”  But I did it! (Update Jan 2019, now all is boxed up and put away, but Jerry had recovered enough to help with the disassembling of the tree back into its 3 parts and repacking it into the box, tying that box up and getting it back into the closet corner.) 

I am very late on sending cards, this was a year of challenges, confirming that aging is not for sissies.  

We are looking forward to spring.  Wishing a Merry Christmas and Happy New Year.   "

So there it is,  the events that led to being suspended snowbirds, stuck northward another winter, cancelling all FL reservations.  Two weeks ago Jerry felt well enough to venture down the back to the motor home house to check on the rolling castle on wheels, all is good.  Ahead, the future, always ahead, do not look back, that never works well.