Getting Oriented

In one day I got pretty well oriented to what our future will be for the next 2 months or so.  Knowing little before hand had me focusing on the home front - things I needed to do logistically to make our future months a little more organized.

For me, my first step above all others was reducing my focus on all other things and laser beaming in on what things would make my life and my husband’s simpler.  That started with reducing my calendar to just the home and my husband - and the many doctor visits ahead of both of us.  While I understand that having that narrow view might not work for all, it definitely works for me.  It is like a “peace of mind” settles on me knowing I have freed up the time I need to be successful at what I need to do.

In a previous blog post I looked at the concept of “joy” which I was cautioned not to eliminate from my own life.  Thankfully I can find many opportunities for joy inside my 4 walls.  And with reduced exterior distractions, I can actually enjoy those home opportunities better.  Others may need their fun to come from external sources.  Thankfully that is not the case for me.  So the first steps in preparing ... are done.

The second step was attending the radiation and chemo orientation appointments which we did on Monday. That was enlightening as it gave structure to the typical treatment plan going forward, with time lines and hurdles the patient will face along the way.  One of those hurdles with radiation treatments of the throat is the physical problem with swallowing ... that becomes a major issue a few weeks into treatment.  And speaking of “weeks,” his radiation treatments will extend every day Monday through Friday for 5 or 6 weeks.  So getting enough nutrition and hydration becomes a major time consuming process at some point.  There are some medicinal options to aid patients with that stage and I am sure we will get the full picture as we approach that hurdle.  The other hurdle is the chronic fatigue.  Not much can be done for that except to give into the need to rest and give your body the downtime it needs to cope with this treatment assault and to heal after that treatment ends.  There are other side effects but those two are the major ones to manage.  Chemo will happen once a week at the same time as the radiation treatments.  As it turns out, the side effects from the chemo drugs he will be infused with have little to no side effects.  It is pretty much a fight to withstand the radiation. 

Having that knowledge I am preparing notes of the kinds of things we should have available of the soft food variety that can be swallowed the easiest and provides the most calories.  I’ll probably keep a diary of his intake - they will be monitoring his weight with each visit - and we will be assisted by a nutritionist through the tough stages.

One other personal realization was made very very clear during these two orientation sessions.  While my right knee is slowly (very very slowly) improving with PT - one walk into the first office and subsequent walking from point A to point B (and C and D and ...), that kind of walking 5 days a week for 5-6 weeks will not be possible.  I came home limping - right knee very sore - and I spent most of the evening on ice.  The next morning the knee was improved to the point it was before that first trip.  But repeating this walking routine day after day after day ...  at some point I would lose ground on the improvement and be unable to be his driver/companion for his treatments.  Unacceptable! So I contacted my rheumatologist and requested an appointment for the cortisone injections into the knee.  I’ll keep the PT going because long term that is the best choice, but in the short term, it is pretty much useless for the knee under so much irritating use.

I have the added invisible health issue of anemia.  The blood counts have been dipping again.  Another iron infusion has been ordered, and my appointment is set for September 3.  That timing is perfect!  I’ll get the infusion and within 3 or 4 days I should have my energy (and mental focus) back.  Those infusions last me about 5 or 6 months .... lasting long enough to get my husband over this treatment phase.

Lastly - my new tote performed admirably.  Before packing it up for its maiden voyage, I had second thoughts.  It seems just a bit too big.  But after I finished packing, I realized it was just about the right size. I walked with it over my shoulder freeing my one hand to use a cane and my other hand to guide my husband. I did notice that my 32 ounce water bottle was just a bit too big to fit into the bag comfortably so I ordered a 16 ounce bottle which should fit just fine.  Sixteen ounces is about the right amount to carry on individual trips.

So we are off and “running” ... figuratively speaking.  

A little knitting stuff (sadly very little) ... and other stuff

If you had told me 2 years ago, that I would have set aside my knitting needles for 9 or 10 months, I probably would have dramatically jump up and shouted with incredulity “Impossible” (and maybe pumped my fist in the air a few times  ... or something.😀)  

But it happened. I just stopped knitting.  There are no finished items to show, but I do have one work in progress.  (I actually have several unfinished projects - but only one that can be described as “in progress!”)

This pattern is a shawl but will be more of a shawlette.
 I have maybe 2 more rows until bind off.

I added beads.  Not the clearest picture.  
I’ll do another one when it is blocking.

The yarn is Neighborhood Fiber Company, Penthouse 100% Silk Fingering yarn in the color way called Cooper Circle.  The pattern is Simple Shawl by Jane at Hedgerow Yarns - free on Ravelry. It is a very simple pattern - designed to let the beauty of this yarn shine.  You need only 437 yards (400 meters) of fingering weight yarn.  I have 1600 yards - so plenty of yarn - yarn to spare for another project.  I have added glass beads.  All really nice elements.   Not sure why I let it linger for so long. But I am working on it now.

****

The knitting drought began last summer.  At times I was too tired to knit.  At other times my “to do” list was overwhelming. At still other times if I had 15 or 20 minutes of open time, I just sat in my LazyBoy recliner and looked out my window thinking, just thinking.  When I did have the energy and time, I found myself  restless to explore other things.  Simply put, knitting and all things fiber, slipped off the priority list.

What could possibly replace knitting?  Quite a bit, as it turns out.  I wasn’t idle  - I was dabbling in anything that captured my attention and a few things I thought about in the past, but put off 'till “tomorrow."   After my surgery last year, I decided that tomorrow had arrived!

I think I did this picture in June 2023.

This one was done in 2015.  Both pictures are from Lost Ocean by Johanna Basford.
I love her work and have many of her art books.

In sorting and decluttering stuff, I found my coloring books and colored pencils from 2015  when adult coloring was all the rage.  I started it up again.  I love playing with color and giving the flat line art some dimension.  I color in the evening while watching TV - it was something I could do for maybe 15 minutes and put down again.   In 2015 it relaxed me in an unexpected way, and it still does.

I did take a water color class, but it wasn’t the right time or the right teacher.  I still have all the supplies, but not the time or energy to seek out another class.  When the time is right - I’ll give it another try.

These are the shelves used to be full of yarn and so was the closet.  
The shelves have a few yarn items but not anything like before.

This is the closet that holds most of the yarn
 - and it extends about a foot further 
in each direction.  I don’t have a before picture, but it was pretty
much a mess before.

While this might seem yarn-y, it is more downsizing.  I don’t know if it is my age or if it is mentally just more calming to me, but I continued to feel the weight of too many belongings and my large yarn stash didn’t escape my attention.  Realistically, at 77 how much yarn can I use up?  How much do I want to leave behind for my family to deal with?   The stash is much reduced, but still feels “heavy” considering I am having some long knitting hiccups.  Oh well, minimizing is a work in progress.  

Traditional Journal on the left.  CommonPlace Journal on the right.

I did start two journals this summer: a traditional journal and a CommonPlace journal.  I very much like the idea of these two books. But I don’t return to them as often as I would like. Now that I am blogging again, traditional journaling has lost some of it pull. But I am not giving up on either of them. 

This is the foundation to my current Lego kit in progress.
Cinderella’s Castle  

Picture from the box.  
It will be stunning when completed.

My next project is this Dungeons and Dragons piece.  My husband is a 
big game player and when Lego issued this new kit, even though he 
couldn’t see it, he wanted it in our home.  This kit has a
higher priority than anything - because it speaks to his
interests.  And since D&D is a game of the imagination,
it is something he can still do with his friends.  They will enjoy
seeing it when they come for their monthly game dates.

I started Cinderella's Castle last fall and then stopped before last Christmas.  Just writing those words makes me want to get up and pick up where I left off.  I feel strongly enough about Legos that I will make time - especially for that D&D kit.

My daughter’s dog, Tatter Tot or Tate for short. As a baby he looked like a baked potato.
He now looks like a spud ... I mean stud! 😂  He developed a real attachment
to his grandma during the 5 months he lived in her condo.
Described by a private professional dog trainer that my daughter hired
as the smartest and most stubborn English Bulldog she ever worked with.
Indeed, I agree.

My son’s English Bulldog, Ragnar, Rags for short, who loves is Grandma dearly as well 
and who eats things that are not digestible - like
that tennis ball in the picture.  Yes, a piece of
tennis ball resides in his stomach - and tennis balls are now
 nowhere to be found on the 6 acres he lives on. That is what happens when you
eat your favorites toys! They go away forever.

My son’s other dog, Olivia, Livvy for short.  She is a mixed
breed rescue and the sweetest personality ever.  My daughter-in-law
picked her out in a shelter when she was 2 years old
and from that time Livvy’s ‘person' has been my
daughter-in-law!  But she is happy to accept hugs and kisses 
from everyone.

My 3 grand dogs ... Those mutts are so very, very dear to me.  I did a whole lot of dog and house sitting in the last year.   Right now, however, my knees are my “achilles heel” and they need to be in better shape before I return to dog duty.  That makes me sad no matter how logical and mature that decision is.  With my husband’s cancer treatment looming ahead of us, it is hard to know when I can get back to that most lovely past time.

It was time consuming to set up the first planner.  It was
just as time consuming transferring over to this second planner.
But I am good now until December 2025, I hope.

The first 6 months of this year were devoted in part to setting up a Laurel Dennis (LD) Planner - and getting really wrapped up in decorating and list making and seeing what others were doing.  Don’t get me wrong.  LD is a sensational system and you do as much as you choose to do.  I extended beyond what was good for me, and I did myself in. No matter.  I am happy with my new more traditional and minimized planner.  

These tomatoes were planted in November. 9 month old.  It has given me
multiple pints of tasty grape tomatoes. These 3 plants would
probably continue to produce well past their 1st birthday.
But I will be changing it out soon, and plant lettuce.
Yum!

In October 2023 I got the bug to try my hand at water gardening.  Amazon was having a sale and I purchased an Aerogarden Harvest Planter.  I wanted to grow herbs.  That was 10 months ago and I have done herbs, grape tomatoes, mini bok choi, mini cucumbers and lettuce - not all in one planter, of course.  I was up to 4 planters by Christmas (warning - this kind of planting can be addictive. There are people who have whole rooms of water gardening projects.). Cucumbers were a fail for me, tried twice, great leaves, lovely flowers, and awful cucumbers with real no taste - but the other stuff was great.  I think I will stick with lettuce and herbs.  I may try some flowers.  

****

The background “noise” on these fun activities listed above is this:  I rarely have more than an hour in a day to participate in any of them.  Besides being the primary person who makes this household operate, I am my husband’s eyes - from finding a lost item to attending all his appointments.  It's like living 1.5 of a life.  Not a criticism - just a reality.  

And a second barrier to pursuing these things is this:  I have energy issues due to some deficiencies in the lone kidney.  Just a side-effect of going down to one kidney at 77 when kidney function is normally reducing due to age.  It is not clear if this will eventually correct itself, but for now I am getting iron infusions, and kidney hormone injections may be in my future.  Since I am retired - when the fatigue hits (which it does every day) - at least I have the option to lay down and rest. 

Fun stuff gets tabled all the time.

The up side .... I have a cleaning lady!!! Actually 2.  So I don’t waste any of my limited energy on cleaning toilets, kitchen floors, vacuuming, etc. etc. etc.

Getting a cleaning lady really freed up some time.  I highly recommend it even if you do have two fully functioning kidneys!! 😁

Next time ... 

I have no idea.  But it probably will be next week. It won’t be this long - but I had a few things to catch up on - AND Sunday I will have my grand daughter so you can be sure there will be a few pictures of her in the mix.

The Right Knee

If you don’t want to hear about an old woman’s knee saga, you should just skip ahead to another blog post.  It is ok by me, really.

While my main concerns are for my husband, I have had one or two inquiries about my right knee.  This  knee did its best to take center stage right in the middle of my husband’s serious cancer diagnosis.  This right knee is very narcissistic!  She likes to think that it is all about her!  And I, the owner of this right knee, feel differently.  But I thought I would give her center stage right now, in this blog post, so that later - when we are dealing with more serious stuff, she will keep her trap shut. 

(I hope she is listening.)

This right knee has aged me in the last few months, but truthfully, it probably has been a growing problem for 5 to 10 years.  I just didn’t know the scope of it until last year.  Currently if I sit - it feels normal-ish.  Good for the knee, bad for the rest of my body.  If I try to use it - like going to the bathroom, getting ready for bed, walking to the washing machine - it feels a bit tempermental.  Trips grocery shopping, walking trash to the dumpsters, a casual walk outside for exercise, ... she can be sore enough to need ice packs when I get back.  When she is really bad, it burns, it radiates pain down and sometimes up the leg.  Putting body weight on it can cause a level 8 pain on a scale of 1-10 with 10 being the worst pain ever.  When it is like that it hurts to sit, to stand, to walk, to lay down, to breathe - it just hurts!  Thankfully level 8 pain doesn’t happen often. But it did happened at the worst possible time - when I needed to be with the man I spent 55 years of my life with, and who is now getting the worst bad news of his life.  When my right knee gets in the way of that -  I have absolutely no compassion for my stupid right knee. 

Arthritis is the diagnosis on X-ray for the inflammation.  For the last 5-10 years I have been on an anti-inflammatory called Celebrex.    But things changed greatly last year.  My kidney surgery separated me from all anti-inflammatory meds. So my very best friend, Celebrex, and I parted ways. Arthritis Strength Tylenol is my new friend, sort of.  And Voltaren gel rubbed on the knee four times a day is a life saver!  When I stopped Celebrex last year,  I discovered just how much arthritis I do have in my body. It all flared up: lower back (surprise, surprise), in my knees (sigh),  in my thumbs (more surprise), and apparently even in my big toe joints.  I sure do miss my best friend.

Stunningly, I don’t think my knee pain is due to arthritis at present.  I also have a history of meniscus tears in my left knee - tears that were fixed in a 2017 surgery. So I know what meniscus pain is like and this right knee pain is pretty much the same. They don't want to do surgery to fix a meniscus if there is arthritis in the knee - which makes sense.  Do the surgery and the patient still has pain because of the arthritis. Not a good outcome even if you fixed one problem.  So I am left with 1) Physical Therapy, 2) cortisone injections or ... drum roll ... 3) knee replacement!!!   Knee replacement seems like an extreme reaction for a torn tissue. Based on a number of people I know who had knee replacement, recovery is hard and not always successful. 

Going forward...

No surgery for me of any kind.  At my age surgery seriously sets you back physically. If the condition is life threatening, then I would do it.  But in 2017 it took almost a year to gain back my function and trust in my left knee.  And  I was 7 years younger then.  

I am in PT now to get my legs stronger to support the knee better and give the meniscus, if damaged, a chance to heal on its own.  Some meniscus tears can heal if the tear is located in an area that has blood supply.  Since I haven’t had an MRI of the right knee - we don’t know exactly where or even if there is a tear.  But, regardless of what it is or isn't, doctors like to start with PT.  And I am a huge supporter of PT.  Actually, this is my 4th or 5th PT in maybe 15 years.  In 2017 I had two sessions of PT.  One before surgery and one after.  In fact, I have an exercise routine that I was already doing based on many of the exercises from 2017.  Apparently my 50 minute routine did not include enough strength exercises.  So we are hitting that harder now. After PT there are always cortisone shots into the knee if I need them.  That worked wonderfully for my lower back - so I am hopeful I will have the same outcome for my knee if it comes to that.

So, there you go folks.  The saga of my right knee.  My heartfelt thanks to any of you who made it all the way to the bottom of this post!  You are my besties, my dearest most beloved of friends ... right after Celebrex.  😂

Disclaimer: I am not a doctor or a nurse or even a medical receptionist.  If you think anything I have said would work for you, you need to check in with your doctor first!!!

Next up??  Maybe a little knitting stuff! 

Totes - How Hard Can It Be

About a month ago, before my husband’s diagnosis, I found this beauty on a website. It was highlighted by someone who used a Laurel Dennis (LD) planner and needed to carry it with her. I was looking for something to carry on a weekend trip I had planned in September.  I bought it.

It is green (my favorite color - much prettier than the picture shows) and had lovely flowers seemingly carved into its surface.  I could see me slinging this over my shoulder on my September trip to carry my current knitting project and the contents of my purse and maybe a few small purchases.    The insides had nice organizational dividers and pockets. 

I realized very fast, however, that this wouldn’t work for my trip when I took it out of the box and put it on my shoulder.  I checked myself in a mirror ... it swamped me!  Too big. Just too darn big.  It had a rather stiff structure that didn’t give when full. It could stand on its own and probably take out a few folks standing near me if I turned too fast.  😂  It was ideal to protect a laptop, carry documents, house a big planner, and as a secret weapon ...  but not good for my needs.  hmmm

Guess my search for a shoulder tote would continue. 

Then everything 

changed with my husband’s diagnosis.

My September weekend trip that I bought this tote for was a no-go for me. My husband would be in the early stages of his treatments. I was totally uncomfortable leaving him home alone to deal with the unknown!!

And my criteria for a functional tote crystalized in one eventful Oncology office visit.

I call it the “Too Much Stuff” visit.

On our trip to the Oncologist to establish a treatment plan for my husband - I carried too much stuff when I was barely able to carry my own weight.  I carried a purse.  I carried a water bottle.  I brought a knitting bag so that I had something to do while waiting (like who knits when their knee is throbbing??). I had my walker, of course  Entering the doctor’s office, I looked discombobulated (is that a real word?) - juggling my “stuff” and my walker with 2 hands and one functional leg - limping up to the front desk trying to find my wallet with one hand digging into my purse, past a Kindle, with the water bottled hanging from my other wrist bouncing against the counter, and my knitting bag dangling somewhere (I just don’t remember.)  All this while standing mostly on one leg.  Seriously, I looked like someone’s poor demented grandma with a blind person in tow and an adult son in the background pointing my attention to the office wheel chair.  I am sure that many of the waiting room folks - most of whom are seriously ill (remember this is Oncology) were thinking “take the wheel chair, lady!”  Yeah - that was a learning trip.  

I wanted no more repeats of that experience!  

I needed a single carry all - a tote of some kind.  Looking into the future our “doctor/testing/treatment” trips had just doubled. So back out to Amazon I go.

And, because I hate shopping in stores now, I am an Amazon shopper through and through.  I know, I know! I am adding to a billionaire’s profits and killing the brick and mortar establishments.  I’ve heard it all before. But I have grown to hate shopping in a store, and my husband and I are focused on avoiding crowds - now more than ever once he is immuno-supressed.  So Amazon, here I come!!

I found these two totes - yes two - because I couldn’t make up my mind.  And both were inexpensive and worked well off my shoulder.  They are almost the same size as the green one, but because they are soft fabric they hug my frame a bit more and don’t act like lethal weapons when I turn. I have plenty of knitting projects that need a home - so of these 3 totes, 2 will house knit projects at home and one will be my buddy on medical trips.

We have another Oncology trip coming up this month.  I plan to “rock my entrance” this time!! (Assuming my right knee cooperates.)

Next time ... The Knee!

That was fast! Filling My Time In the Next Lull

I really didn’t expect the test results the very next day.  And to get the 'second best good news' was just so emotional for me.  The 'first best good news' would be ... "Oh sorry, we got it wrong. No cancer!"  I guess that never happens.

He is scheduled to see the Radiology Oncologist on August 27.  His Chemotherapy Oncologist will see us the next day.  These are informational appointments - not treatments.  It is so hard to wait. I am so ready to get this treatment plan scheduled and initiated, ... another wait ... 11 days more waiting.

I have a feeling that I should stop wishing things to move faster and enjoy this quiet gap in time.  We have the diagnosis and it is as limited as we could hope for.  Curing it might be rocky.  So just cool your jets, lady. The fight is coming. Direct your energies elsewhere for now.

***

Last year I began to drown in medical appointments, testing and details for myself.  My planner in 2023 was a small monthly one and woefully inadequate.  Too much information to hold on to and not enough “planner real-estate” to save them.

Then I discovered the Laurel Dennis line of planners. They have very pretty covers. No decorations inside but enough flexible organization to manage any amount of information.  

It was huge when it was open.  Bigger than I had ever had before. And I loved it.  Lots of space to track appointments, to-do lists, reading lists, shopping lists, my lab tracking, just everything.  The monthly calendar and the weekly calendar were in a single open layout.  I got sucked into decorating - which is a very big deal with most of the customers.  Facebook groups shared the most amazing layouts. I bought stickers and labels and special pens and high lighters and went to town. Below shows my winter theme.  Sorry the pictures aren’t great.  I am out of practice.

Every month I spent time populating the calendar details and decorating.  But by June I realized I was over decorating.  Took too much time.  Random tracking lists were too much and really not a priority  - just too much of everything. I needed just the basics and I had the Encyclopedia Britannica of Planners. I was done.  It was a phase.  (Just a note: Laurel Dennis is an exceptional planner if you want to track more than the basics.  And they have lots of good ideas they share on their YouTube Channel and Facebook Group.  So check them out.)

Then this summer my husband got his diagnosis.  I could anticipate far more appointments and medical details tracking.  I realized pretty quick this book was too big to carry with me.  It really is a desk model.  

Time to start shopping for a new planner - one that was 17 months - August 2024 through December 2025.  I didn’t want to wait until January to switch over. I didn’t want a plain-Jane planner with no style or color, but some planners go crazy in the opposite direction -  filled with a riot of color on every page, and lists for a ton of things.  I needed to have a monthly spread and a weekly spread only and cover  with some color would be nice. A middle of the road kind of planner.

I settled on Rifle Paper Company.  The size is 8”x10” which is a more manageable size that will be easy to take with me but still be big enough to have space to write. It has an attractive hard cover which is nice if you like to attach pen holders like I do.  I like erasable pens and erasable highlighters.  My life and priorities change just too much for permanent anything.  

It has the typical monthly spread.  I consider this to be a high level look at the month.  The weekly spread is the detailed look.  The decorations at the top of both pages - I added.  I have a life time supply of stickers after my Laurel Dennis experience, so they will show up here and there in my planner, but not enough to be distracting.

The weekly spread below is the first week - and I started in the middle of the week so that is why the first three days look sparse.  The right side (Thursday - Sunday) is typical.  And I move stuff around that doesn’t get done - hence the erasable pens. I also like that each day has 2 columns of check off boxes.  So the first column are the to-dos and appointments and the second column is my habit tracking.

The interior of the calendar is all basic black ink on cream color paper with ink sketches that separate the sections.

I think this calendar is going to work.  And I am so glad to be free of the monthly decorating.  I am more of a functional planner - no journaling, no blow-your-mind decorating, no goal listing, no list of books or movies or recipes ... just appointments and to-dos ... and a sincere hope to keep stuff straight.

Next time ... my search for an adequate tote.

PET Results Are In

 NO SPREAD!  

Just the one localized spot on his esophagus.  

Needless to say, we are relieved.  

Seems odd to say “relieved” - when we are still dealing with a difficult cancer.  But it could have been so much worse.

More ... next time.

💗

Test Day

 Totally uneventful. 

It was yesterday and I planned to blog when I got back but was totally exhausted.  I didn’t sleep well the night before.  In fact, my right knee was sore from the PT the day before so I got up to ice it (and worry that I would be too lame the next day ... I wasn’t) and my mind settled on worrying about the results of the test.

How easy it is to say “don’t worry - what will be, will be.”  That works when they are testing me, because I just give myself up to the medical establishment and trust they will do there best.  But it doesn’t work well when they are testing / treating a family member.  It just doesn’t.

The PET Scan is the easiest of all tests in my mind.  Actually any CT scan.  The CT scanner, unlike the MRI, is like a very large donut device that they pass you through.  Of course, a PET scan is a little mind numbing in that they are inserting a very small radioactive solution into your vein and you wait an hour before the test for that solution to be absorbed by your body - and therefore highlight any abnormal growth.  If you can get past that ... the test is only 15 minutes long.  

The worst part of this whole thing is the waiting, and waiting, and waiting.  We waited 2 weeks for this test.  They said the results should be ready in 2-3 days.  So more waiting then.

Today - the day before we enter the Hurricane again.

Today - the day before the PET Scan test that may change our lives again.

We have had some time to adjust to the overall diagnosis.  We have done some research.  We have adjusted our lives to fit the possibilities going forward.  Now all we need is the Stage of this disease - or how far it has silently traveled when we were ignorant of its presence. He began his prep today - which is pretty simple.  No caffeine or sugary items in the 24 hours before the test and nothing but water in the 6 hours before the test. This is a pretty easy test.  We are ready to get this show on the road!

Today - also the day I begin my own efforts to correct my current exercise routine and strengthen my legs.  PT starts (again!!) today.  When I back off the Tylenol and the Voltarin gel, I can tell I am just one step away from another negative event.  I need to be mobile without drugs or gels or physical aids (a cane or walker.)  If the knee fails again, I will begin the injections pronto along with the PT to relieve the pain and keep moving. 

Today is also my husband’s birthday - 78 years old.  

We aren’t party people.  Quiet events are more our style.  We did have the family over on Sunday for dinner and to share time together for this birthday.  Between my husband and I, we seldom celebrate our birthdays!  For some reason, celebrating that you kept breathing another year isn’t a big deal to us personally.  But others like to get together to recognize the passing of another year.  So we gather family.

But birthdays are passive events - time passed. A wedding anniversary requires more effort and deserves more recognition.  We celebrated our 55th Wedding Anniversary in June. We usually eat out on that day. 55 seems like a big number until I canvas our friends who are all married in that range of time.

Regardless - Happy Birthday, dear husband.  And many more.

And tomorrow you actually begin working on your 79th year.

It won’t be just the passing of time

 - and it will be worth a real celebration when the date rolls around

next year!!

You will have earned it.

Joy in the Quiet and in the Storm

In my previous posting I shared some thoughts that my sister sent me.  I have read through her comment several times.  It really is a powerful message.  It was dredged up from her own health challenges in the last few years. (It is repeated again at the bottom of this post.)

Each time I read her words this one idea kept surfacing: her message about Joy.  It is not the first thing that comes to mind when settling into the reality of cancer.   “You need to still be able to find joy in your life.” 

I spent some time thinking about the concept of Joy - and I made a rather dismal discovery.  I am not sure Joy has been in any part of my recent life, much less found regularly in my day-to-day existance.  The more I thought about it the more I wondered if I even knew what to look for.  Comfort came to mind.  I find peace and comfort in my home.  Good thing,  since the future will be pretty much home bound for now.  Satisfaction came to mind.  I feel satisfied at finishing the items on my “to do” list, when I finish a knitted item and it turned out good.  Happiness came to mind.  I feel happy I take care of my grand dogs, when I see my grand daughter, when my adult children are happy and doing well.  Gratitude also came to mind. Contentment ... as well. I had no problems coming up with other words.

But Joy!  Maybe I just don’t know what Joy is.  

So I looked it up.  Yes, friends, after 77 years on this earth, I had to look up the meaning of Joy.  Sad.

Merriam-Webster

1) A feeling of great pleasure or happiness that comes from success, good fortune or a sense of well-being:  gladness. 

2) something that gives joy, a joy to behold.

O-kay then!  It is more a matter of intensity, a higher bar so to speak. 

Using that yardstick - for me Joy was when my son and daughter-in-law got married, discovering my daughter-in-law was pregnant with my grand daughter, the day of my grand daughter’s birth, when my daughter nabbed the house of her dreams after so many months of frustration, my daughter’s soaring and well deserved professional success. Looking further back, the birth of my children, my wedding day.

But in the recent past the only Joy I remember was getting the result that my kidney tumor was not cancer.  THAT was JOY! I have only a few desires that would bring me Joy - that my sister’s medical condition would stabilize, and that my husband’s cancer would reach the status of Remission.  Please understand - these are all HUGE desires.  But that is what would bring me Joy going forward.

I think I will settle for finding these things every day: peace, comfort, satisfaction, happiness, gratitude, contentment. I will settle for one other thing as well: “Everyday is a gift ... those are not just words.”  

Hmmm .... maybe that is where Joy resides.  

I get another day.

 “It is incredibly painful to realize that you are basically at the end of your life, could be a year, could be 5 years, could be longer, could be shorter.  This is what your husband is having to come to terms with now.  If I can give you some advice, it would be not to give up YOUR years, as much as possible. Of course he will need a lot of assistance,.  But whatever is going to happen, is going to happen. You need to still be able to find joy in your life.  Every day is a gift ... those are not just words.  It would be good for your husband to treasure each day as well, but that is up to him. You are a separate person with a separate battle.” 

 

Preparing in the Quiet

Well, the quiet eye of the hurricane continues for us.  We are 3 days away from the PET scan test that will determine if the cancer has spread and if so how far.  In this quiet ... lots of things are still happening.

Having faced the role of caregiving before with other relatives, I have a pattern of preparation that just comes naturally to me.  I know my limits.  I don’t like trying to juggle too much.  And when I am faced with what will be a 24/7 responsibility, I back down everything else.  It can always be added back in.

My social calendar get slashed except for immediately family get-togethers.  I clean house (I know, I know ... clean house?? really??).  Yes, really.  For me clutter and dirt while I am trying to focus on important stuff is very stressful.  This time, however, I don’t need to do the cleaning.  Three months ago we hired a cleaning service.  The time had come when I didn’t have the knees for cleaning floors and bathtubs.  I also spend time researching the thing that will absorb my life for the immediate future. It is sort of like knowing “your enemy” in a battle.

I’ve already received advice from several friends and family to be kind to myself, to not forget to care of myself and to not deep-dive on all social opportunities.  I guess some of these people have seen me go through this before - and know my style.  I know this advice is given from a place of worry and love for me.  But this is my 4th go-round in this role - not my first “rodeo” as they say.  I know what is ahead better than most.  It is hard to explain to them that in doing this I am being kind to myself, because I am not trying to squeeze just one more thing (caregiving) into an already booked calendar.  So I kindly thank them for their concerns and promise I will be careful. But unless there are caregivers for the primary caregiver - people who build time into their own schedule to relieve you - primary caregivers just keep on putting one foot in front of the other to make life happen for both themselves and the person they are caring for.  Truly ... the choices just whittle down to one foot forward at a time - no matter how you mentally approach it or prepare for it.

Regardless of how many times I have done this ... I still try to keep my mind and heart open to the words of others.  I recently received some very personal advice from a very very close source, my sister.  While she has never been a caregiver of an adult relative - I know she cares deeply for me and my husband.  Her own life experience makes her particularly qualified to give a point of view.  She has struggled for years with a very difficult disease that left her on dialysis.  She has faced her own mortality more than once in that time.  She offered me insight into what my husband is experiencing now and thoughts on my own journey.  

 “It is incredibly painful to realize that you are basically at the end of your life, could be a year, could be 5 years, could be longer, could be shorter.  This is what your husband is having to come to terms with now.  If I can give you some advice, it would be not to give up YOUR years, as much as possible. Of course he will need a lot of assistance,.  But whatever is going to happen, is going to happen. You need to still be able to find joy in your life.  Every day is a gift ... those are not just words.  It would be good for your husband to treasure each day as well, but that is up to him. You are a separate person with a separate battle.”    

 Find joy.  

That was not on my preparation list.

Next time ... 

   

The Quiet Eye of a Hurricane

After the flood of shock, emotions and unanswered questions have passed and the initial appointments are set into motion, there is a pause.  Like a hurricane, at first there is the rush and furry, then there is the calm of the eye or the center of the storm - usually quiet - until the hurricane returns again.

We are in the eye of this hurricane right now.

Last week was so stressed and filled with worry.  And now, because we are waiting on my husband’s PET Scan appointment, there is quiet ... time to let other issues surface.

My biggest blessing amid all this scary medical stuff.  Our adult children. No matter how hard you prepare - how hard you seek to remain independent as an elderly adult - the realities of aging can overwhelm you at times.  Having family to help is the biggest gift of our lives.  But our adult children - well, I am in awe of the wonderful people they have become. When you are in the middle of raising a child to adulthood, one of the things you provide without even thinking is a life safety net.  It never crosses your mind that this little person in the middle of a “terrible two” melt down or a crazy teen who is driving you to distraction on any given day - will grow up to offer that same safety net to you when your body starts to fail.  That’s what happened to us in this hurricane.  A safety net suddenly appeared just when we needed it.

As I write now, it has been 6 days since my right knee painfully buckled under me.  It has improved.  It is back to its previous condition - a little painful at times, somewhat stiff.  I don’t use a walker or cane for everyday use.   I do use a cane when I first rise in the morning and carry it when I leave the house, because I just don’t trust the knee yet. With heat, meds, and rest, I am functional. With PT, in the future I may feel confident enough to leave the cane behind completely. But for now, every day is an improvement over the next.  Which is a good thing, because I don’t need to be 'the floor show' for the oncology waiting room every time we go - and we will be going to their office frequently since both chemo and radiation treatments are done there.

Am I under a doctor’s care?  Yes.  In fact, I saw a doctor for this knee 2 weeks ago.  It has been cranky for more than a year, but I good at ignoring every little ache or pain. I guess my right knee felt the need to make a more dramatic impression - “Let's see how you do with only one good leg” kind of impression!!😂   An argument could be made that I deserved this knee failure - shame on me for ignoring the little signals for so long.  I agree. It was just the timing that was so, so sucky!!!! Anyway, I did contact the doctor when this all happened - but he wanted me in PT.  Ironically my first PT visit was scheduled for the same day as my knee buckled.  I had to cancel that appointment. In that moment, that 2 day period, my husband’s needs trumped all others. PT has been rescheduled. The tentative diagnosis is a torn meniscus - and arthritis.  The arthritis was seen on x-ray back in 2017 and has only slightly gotten worse as seen on a repeat x-ray 2 weeks ago.  The torn meniscus is an assumption for the sudden onset of pain. An MRI would be needed to confirm that.  But as my doctor said, if you have arthritis, they do not do surgery to correct a torn meniscus, because the arthritis pain will still be there.  PT is my only option - and if that fails, cortisone injections.

But with the quiet of this storm comes the swirling thoughts and fears.  I Googled Esophageal Cancer - the survival rates, the treatments, the problems.  The information is ... well ... concerning.  I don’t recommend the internet for medical information, but if you go to trusted sites you can get a general sense of the disease.  What are the cure rates? How sick will this chemo and radiation make him? Are there drugs to counter the side effect? How long do chemo and radiation treatments typically last?  What if they aren’t successful?  

Questions beyond that ... I just cannot make them real by typing them here yet.  But those last unspoken questions just won’t leave me alone.  They torment almost every silent moment.

I almost welcome the noise of the returning hurricane.   

The Second Day

I knew before I hit the bed the night before, that I was going to this Oncology appointment with my husband.  Our son was already prepared to do the driving.  While I was pretty sure I could get us to the car, that I could drive and get into the Oncology practice, I had to admit there was a chance I would not be in good enough shape to get us home.  Oh, and how true that was.

I prepped for this appointment.  I borrowed a walker from a neighbor.  On the walker I was steady and in less pain.  I had been icing the knee so the swelling was reduced and I was taking the full dose of 8 hour extra strength Arthritis meds. I wrapped it in an Ace bandage.  I slathered on Voltaren Gel. Before we left I took 200mg of Advil.  All anti-inflammatories like Advil are on the “no-no list” for reduced kidney function patients like me.  But my reduced function is not disease related.  It is lower because there is only one kidney.  Still the restriction was in place and I chose to break the rules.  I needed it for this appointment. I asked my son to bring some Advil - since we didn’t have any in the house. I doubt it even occurred to him to challenge me.  He and I are “apples off the same tree.”  He bends the rules all the time.  😂

Leaving the condo I felt this was going to work.  All the meds, the pain gel, the ice, the ace bandage and the walker combined!! It still hurt but it wasn’t a “bite-a-bullet” hurt.  The thought crossed my mind - again - I feel well enough, I could probably do this without help.  (But little voice persisted: there was still that trip home to worry about.)

Once in the doctor’s parking lot our son helped us out of his car as close as he could to the front door.  My husband and I began to make our way while my son parked his car.  The distance wasn’t terribly far, but it was more than I had done previously.  By the time we got to the external doors, our son was behind us.  The Oncology Practice was near.  Once my husband was seated in the waiting room I went to sign in.  At some point I looked up and my son was standing by a group of wheel chairs, point at them with raised eye-brows indicating ...”What do you think?”  I nodded yes.

I was done.  

I really need to listen to the adult portion of my brain a bit more.  I knew an independent round trip to the doctor’s office wasn’t possible at that point.  But I kept pushing the idea that it might be doable. Thank God our son was with us.

Getting us into an exam room was a bit of a side-show event for the occupants of the waiting room.  My blind husband doesn’t walk independently outside of our condo.  He depends on someone beside him (me).  The Me - the one in a wheel chair!!  And the Me - who wasn’t particularly skilled wheeling a wheel chair.  😂.  Which became evident to the “I-can-do-anything” Me when I tried to go forward and I actually moved backward. *sigh*  So we went into the exam room in stages.  Our son said - I’ll be back for you.  (As I waited, it passed my awareness that I was so close to the exam room but NOT actually IN the room. I didn’t know whether to laugh or cry at that point.). He did return, however, as promised. I never doubted him really.

The visit went as expected.  We already knew the diagnosis.  The treatment plan needed to be flushed out.  My husband has opted to omit surgery and go with chemo and radiation treatments only.  The doctor agreed with his decision.  He indicated that a surgical fix in our age group has a high morbidity rate.  Once the surgery was described, I agreed.  Next step is Staging - finding out if the cancer has spread.  He is scheduled for a Pet Scan.  Chemo and radiation will follow soon after - unless it is Stage 4 - which means it has spread too far for treatment, and palliative or hospice care is the appropriate next step. Obviously we are hoping (praying) for a Stage 1.

When the visit was done, the doctor helped us by wheeling me toward the check out desk.  Our son helped his father.  It crossed my mind that not only was an independent round trip impossible, but we probably would have benefited from 2 helpers.  After check out, our son helped my husband out to the car and a staff member in the office wheeled me out.  (Yep!  2 helpers.)

The lady who wheeled me out commented that she saw us arrive and wondered just how we managed to do this (blind man on the arm of a woman struggling to walk on a walker - what a sight we must have made) - until she saw our son.  I resisted telling her the truth - that a hard-headed, stubborn, stupid witch of a woman was hell-bent on making it happen!  I just sweetly said that I probably underestimated the help we would need.  I left out the hidden truth that I thought we could do this with no help!!!  😂😂😂

I have enough medical appointments on my schedule between myself and my husband - I don’t need to add psychiatry!

Those are pretty much the external details. More on the internal details and emotions ... next time.

The Day Our Lives Changed

 In April when I stopped blogging, life was quite normal for this 77 year old couple, married 55 years last June. We expected changes as our bodies approached their “use by” date.  We kept up with our screenings, vaccinations and physician check ins.  Yes, I had that pesky kidney tumor issue last year and since then have seen a great number of doctors about various issues.  You know when you really start looking you just find stuff.  But that tumor was not cancer and all my hyper vigilant doctors were winding down their oversight over my body (finally!). 

Exactly a week ago today, as my husband and I discussed his upcoming EGD on Tuesday, we had no indication of a problem. The EGD was for confirmation of reflux.  Think on it!  Probably half the population has some sort of acid reflux. Routine, routine, routine.  My first glimmer that this wasn’t routine was on Tuesday after the EGD.  The doctor came into the recovery area and stated immediately that they had found something.  It was a 4 cm mass in his esophagus.  The doctor showed me the pictures (my husband is blind) and said he put a rush on the biopsies.  As we got up to leave, the doctor looked directly at me and said, "I am very glad we did this procedure today. Very glad.”  I knew then what the result would be.  The doc never said the word “cancer” but having worked in health care myself, I recognized the buzz words. the urgency and the body language. He knew.  

And I knew.  I could feel my heart pounding in my chest.

We went home. I wanted to be wrong.

On Wednesday morning we decided to go to the senior gym.  As we walked into the building, my right leg suddenly buckled and intense pain radiated in all directions from the knee. I never experienced anything with that intensity and lack of warning.  We moved to the wall, I took an arthritis strength Tylenol and applied Voltaron, an anti-inflammatory cream, on my knee.  Normally the cream takes less than a minute to start to work.  Nothing.  We stumbled back to the car and headed home.  The drive was short and thank God uneventful - but very painful. The tylenol and the Voltaron wasn’t touching this. Weight bearing - every step - was a teeth grinding effort.

Once at home while pondering what to do about the knee, the call from the GI office came in.  They wanted to see my husband in the office that day.  This confirmed in my mind that this was cancer!  They didn’t want to do this over the phone. After we hung up, I said the cancer word out loud. I wanted him to get prepared for the very strong possibility of that diagnosis.  But ... how was I going to get him there? We had just made it home from the gym trip, but I couldn’t stand upright ... more walking and more driving seemed impossible. He doesn’t drive.

Thankfully our son is local.  He came and took his dad to the appointment. I was linked in by phone.

GI wanted him seen within 2 weeks with an Oncology practice.  While they were driving back home, I was on the phone to the Hematology/Oncology Practice that both my husband and I were already established with due to anemia.  By dinner time I had him on our hematologist/oncologist schedule for 11:30 am. That dear man double booked my husband onto his schedule.  His assistant said - there might be a wait, but he wants to see you. I was so grateful.  When I had my kidney tumor, it took me two weeks to get on a surgeon’s schedule and I had to go to a neighboring city to get THAT appointment!!

Looking back on that day, it was filled with dread and pain and frustration.  I don’t think either of us recognized the realities of this condition at that point.  He was walking around feeling fine.  It had a kind of surreal feel to it - and a mental numbness for me, that sets in the moment a bad thing happens and I need to be fully functional and take action.  

The emotion that typically follows such an announcement didn’t bubble up until the third day. And to be really honest, I don’t think it has all come out even yet - a week later.

The next day had its funny moments and sobering ones.  Next time ...  

 

Life is never "buttoned up"!

Life never ever goes in the way you think it will.  

Never. 

I am returning to this space that gave me a place to sort out my thoughts, my emotions, my experiences and my choices.  It is the space that got me through the most difficult 8 years of my life -  caregiving for my mom.

In the blink of an eye, I am back - in a role I never thought I would take on again.  Caregiving. 

With mom, I didn’t have a clear picture of what the future would be.  I just knew I had the heart and the means to offered her a helping hand during a time in her life when it was needed.  I was, of course, naive.  It was so much more than a “helping hand.”  It became a vocation that devoured my whole life.  From that suffocating role, this blog was born.  It was my out! My way of holding onto bits and pieces of the me I was loosing as a full time caregiver.  

This time I am pretty sure of what the path ahead holds for me.  I am not naive. And that realization fills me with dread. I am also just as sure this path ahead will invade new and different areas of my heart and soul - because the caregiving now is for my husband.  Helping my husband (and myself) navigate his difficult journey of Esophageal Cancer will invade more of me in ways I can’t even begin to imagine. Just like before I am seeking to leave a history and possibly a “bread crumb” trail back to myself  ... a trail to follow when I am no longer caregiving. 

I began this blog with no followers, and I suspect I am returning to this blog the same way.   But I am at peace with that.  As I have always done, I write the blog for me and to me.  I write so that I can create a history. I write so that I can find my way back again to a new normal at the end.

But if anyone does show up here - I welcome you back.  Not because I seek admiration or confirmation of any kind.  In my experience, humans are caring social creatures.  Having a place to gather - even if it is a remote gathering space like a blog is worth its weight in gold!

So I will return here soon to document the first steps we have already taken just this past week.