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.  

Time to Sum Things Up

I have thought off and on about my blog and what I wanted to do in the future.  It has been a difficult decision to make after such a long run.  So many wonderful and not so wonderful memories are documented here.  It's like saying an official goodbye to an old friend. 

This evening I decided to check in and see how long it has been since I posted anything.  Mid-August 2023.  Eight months.  Gosh. I think I made a choice by default.  No activity is a decision!

I always felt I wouldn’t just disappear.  I wanted to close out this blog officially with a final post.  And this is my final post.

First let me say, I am just fine.  I am not ill or depressed or hiding some dreadful life change.  While my health is not as good as it was say ... 5 years ago - I am relatively health for a 77 year old.  I have many interests - many of which I had shared on this blog.  I see friends and family.  I enjoy books and play with Legos, work on minimizing the size of all my stuff, knit on occasion - all the typical stuff for me.  I am even branching out and exploring water color and colored pencil art.  That may not go anywhere, but it has crossed my mind many times over the years - so I am opting to do it this year. If not now, when?   I am not idle.  My days are full, and I enjoy my life.

But blogging has slipped off the radar for me - and that has been the case for a few years.  I don’t see that changing. It used to make me sad at the thought that I might close this blog down but even that emotion is now gone.  I see it as a phase of my life that has passed and other things have taken its place.

Thank you to any hangers-on who happen to find this post.  I totally enjoyed ‘meeting' you through this medium, and I still enjoy reading your posts.  I know most of my regular readers have moved on and that is to be expected.  But I wish anyone reading this all the best.  

Ann and Jane - Their YouTube Videos, Cookbooks, and their infectious zest for life and food!!

Once I knew my eating life was going to change and center mostly around a plant based diet, 

• ... and once I found a way to control my disappointment that this would be forever, 
• ... and once I recognized that my body had already been evolving in that direction anyway, 
• ... and once I accepted the time involved to develop a library of meals that were good,
• ... and once I adopted the idea that I would need to do more cooking (!!yikes!!), 

Yeah ... once I got passed a few little bumps in the road - I decided to change up my approach.  After all, what we enjoy in life is frequently influenced attitude ... and I had to 'go find me' a different attitude!! 

I started with YouTube videos because they were cheap (free) and I could skim through various feeds quickly (‘cause not everyone out there is good at this, you know.)   I don’t know how many videos I started then skipped before I came to an almost hour long video called:

                Fresh Start! An Intro to Plant-Based Eating for Newbies

.  

That's me - Newbie and a Fresh Start is what I was looking for!  

At first a man was briefly going over the main points of this diet.  Ok, I was good with that. But behind him his wife starting doing silly things as each point was introduced.  That was corny.  I decided to skip it.  I watched and skipped a few other videos, and then I came to another video with this same woman (Jane) and her mother (Ann), and they were cooking together, chatting away, and obviously enjoying each other’s company. Something just drew me in.  I paused that video, and I returned to the Fresh Start video - and this time I listened to the full hour.  What followed was Ann (mother, age 87) and Jane (daughter, age 56) cooking together and talking about the topic of Plant-Based eating.  They were charming.  It looked totally unrehearsed, the background was Ann’s very normal kitchen, there were no edits,  or no glossy professional food pictures. The video just ran and their little disagreements were captured but never taken seriously, and they both were filled with enthusiasm and joy for this Plant Based diet.  By the end of the hour, I was totally hooked!

In the picture on the right - the two ladies in the Yoga pose - Ann, the mother, is on the right.
At the time the book was published, she was 88!  

What wasn’t evident initially was the real science from the Esselstyn Foundation and family life experiences behind this very like-able pair.  Ann is the wife of Dr. Caldwell B Esselstyn, the author of a book Prevent and Reverse Heart Disease.  Ann then wrote the recipe companion book called Prevent and Reverse Heart Disease Cookbook.   In addition, their whole family, (adult children, adult children’s spouses, and grandchildren) are all plant based.  Ann and Jane have over 140 videos on YouTube demonstrating various food prep strategies, and they are the authors of the book Be A Plant-Based Woman Warrior which I ordered.  It is an amazing book.  Extremely well done and very inviting.  

So ... did I find my new attitude?  I did.  I totally love these two lovely ladies and their approach. 

Now here is my disclaimer on all this. 

My goal is to improve my diet.  I believe eating a more plant based diet will do that following many of their guidelines.  But have I adopted ALL their practices without exception? No. 

Here are my exceptions.

• Eat nothing with a face: Well ... if you are plant based, that is an expectation, but in social situations I'll be flexible just to be polite.  That shouldn’t happen often.  This is about diet choices, not cult obedience! One animal protein meal now and then won’t undo months of plant based eating.
• No eggs, no dairy: Hmm ....  I eat eggs or egg whites every morning.  If I start my day with anything else, I am hungry at 10:30 am.  I'll listen to my body for now and keep to my routine.  And no fat plain greek yogurt is a healthy choice in almost every other diet. It will remain in my diet occasionally. 
• No oil:  I can drastically reduce my oil intake, but minimal olive oil will stay.

Other plant based guidelines strongly recommended by Dr. Esselstyn and company that I can get behind are:  avoid salt (buy salt free products) and minimize sugar, eat greens 6 times a day - as much as possible, eat more oats - as much as possible, eat lots of beans and lentils, eat whole grains, limit coconut, nuts and avocados (eliminate those 3 entirely if you have heart disease,) eat a tablespoon of chia seeds and/or flax seed meal each day, drink lots of water, read the ingredients of any item you purchase.  

Got it!

 

I suspect their ideas are very similar to that of others who espouse plant based eating.  But what the mother and daughter team brought to me was their total joy and fun and enthusiasm for cooking and eating a plant based diet ... all of it presented in a way that says ... “Yup!! - you can do this -  follow us.”

I am following.

Back again with a Leona and Lennie Update

The “update" of Leona and Lennie

(thank you Wendy for the Liver name Lennie - it is perfect!)

 is short and sweet.  

All seems pretty quiet with no changes.  Leona, the singleton kidney, is still plugging along at a kidney function in the 30s or Stage 3, and it may be a year or more before we see any movement upward (or maybe never if my Internist is correct.)   As far as Lennie, my bigger than normal liver, is concerned, no news is good news.  Lab work is normal.  Of course, making life easier for Lennie, might help him shrink - only time will tell.  

And how do you make life easier for a kidney and a liver??  Life style changes, it appears.  No magic pill or treatment.  An improved diet and exercise routine.  Easy-peasy, right?

Sort of.

Diet wise I was drifting towards a Mediterranean Diet about a year and a half ago.  I was not rigid in that choice, but it was just a way to drop some poor choices off my dinner plate without making too large a split from the foods my husband preferred.  This past spring, however, when my medical concerns shifted from - “gosh I am getting old” to “yikes, one kidney down, cancer avoided and a fatty liver” ... my diet decisions shifted into high gear.  Lean protein and less less of it, reduced salt, lower potassium and phosphorus, complex carbs and less of them too, and minimal fats - just to name the big players in the food story. It seemed like only one “diet structure” fit those concerns: plant based eating.  And to be honest, that kind of eating suits me very well. While I welcome these food changes, it comes with some effort.

I don’t live alone - and my spouse is a 'meat and potatoes' kind of guy.  While he supports whatever I want to do with my diet, he is not interested in any changes to his diet.  I support that - in theory.  The consequence, however, of two separate diets means more planning and more cooking for me.  And I am not wild about cooking.  But I am finding work-arounds.  I still make his favorites, but he knows he will be eating them as left overs since I am not sharing in those meals any more. 

For my diet, the work is harder.  I don’t have a lifetime of plant based recipes ready to whip out like I do for him.  I am still figuring out the basics:  finding and experimenting with recipes, discovering half of what I make for myself I don’t want to repeat, locating cooks and cookbooks that offer reasonable creations that don’t involve 20+ different ingredients, some that are hard to find and may never be used again.  And finding plant based recipes that don’t rely on salt to punch up the flavor is an advanced study course well beyond the basics.

And speaking of salt, my tongue (who has done absolutely nothing wrong in this whole adventure) is working hard to adjust to reduced or no salt meals.  Seriously, I came from a family that salted everything - even before tasting.  I salted things like bagels.  I was the salt queen.  No longer. That adjustment is actually coming along fairly well.  A few weeks ago, my husband wanted hotdogs for dinner.  My day had been very busy and my energy was low, so we both had hotdogs.  Wow.  That was eyeopening. Those dogs were very salty.

Beyond the taste, all food needs to be balanced with an eye to the big four: Potassium, Phosphorus, Salt and Protein - not to forget the other supporting players of Carbs and Fats.  Juggling those elements for every ingredient can make your head spin.  Thankfully I found an “app for that.”  It is called Cronometer and it took all the leg work out of totaling up those elements from the foods I log into it.  Thank God for technology.  But be careful what you ask for.  I discovered that although I am eating a more plant based diet, I still am getting too many carbs and too much fat. I am even getting too much salt on some days (the hotdog day aside.) So off I go on another quest to find other foods and  combinations that are better.  It never ends.  Gone are the days when I could walk into a farmer's market and joyfully know that absolutely EVERYTHING there was healthy for me.  Sadly, that is no longer entirely true.  Spinach, kale and dark leaf plants are potassium rich.  Got to be careful with those - because “rich” in this context is bad - not good.  And mellons and bananas, my very favorite and safe fruits, are also very very potassium rich.  A single serving - maybe once a day.  And be sure you know what a “single serving” is ... it is less than you might think. 

So so many elements to considered and understood and adopted.

Anyway,  I am learning and adjusting and most importantly, persisting ... because this isn’t just until I loose a few pounds - it is forever. I am not going to grow a second kidney.  My liver, once healed can be made sick and enlarged again if not careful. But the weight loss has been a pleasant side effect - like positive reward for making all this effort.  In fact, since last year I have lost 23 pounds.  Ten pounds were from Weight Watchers over 6 months.  Pretty uninspiring.  But between May and July I lost another 13 pounds.  That was all due to plant based eating.  And I am still losing, but just more slowly.  The weight loss was welcomed - and I am within 4 pounds now of a normal BMI which is important to my health. So that is all good.  I will be happier with this new way of eating when I have a selection of successful plant based food items to prepare without effort.

I sincerely hope that at my next lab test, we will see some appreciation from Leona and Lennie.

I will make a sincere effort to not let another month pass before blogging again!  Maybe with pictures next time.

Cheers all.