Mark Twain

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do ...
Explore. Dream. Discover." Mark Twain

Tuesday, May 23, 2023

A break in the action

The last few weeks have been a roller coaster ride.  This week is an appointment free week.  As much as I really want to move forward, I am glad for a break in the action.  I need to get my brain and emotions in sync.

But while I am on a mini-high right now, my CT results came back: normal for my age.  Bones show age related degeneration and some arthritis only!  Beautiful words.  A month ago I would have fretted over those results. Not now.  It is all about perspective!  Now I want nothing more than to be “normal for my age.”   (But I do have to keep up those leg and back exercises.)

Other thoughts have been taking up space in my brain.

?? A Preferred Cancer List ??

To start ... if you have to get cancer, I guess kidney cancer is pretty high on the “preferred list” if there is such a ridiculous thing as a “preferred list” for cancer.  It can be cured with the swipe of a surgical knife.  You have a back up kidney, and one kidney is actually plenty to live a normal life. Renal Cancer doesn’t spread fast.  My tumor is large so it is hard to know how long it has been sitting in there with plans to spread its wings.  Still - the feedback so far is that it has not spread. 

Even with all those positives (?), it IS a Cancer!  It can hide for a long time and it can spread. I got lucky - it was found, but I want it out (... like yesterday.).  If it has spread I am ready for Oncology (... like yesterday). Give me those drugs.  Give me that radiation.  Sign me up for all the weapons of medical “war” that science has to offer (... like the day before yesterday!!) Can you tell that patience is not one of my virtues?

The Real Me

The real me - (the "cut it out, poison it, burn-it-to-the-ground" me) - that me hasn't changed one bit since I was in my 20s. I am an Aries** through and through. Stubborn, hard-headed,  opinionated, etc.  My kind of personality is hard to be around sometimes!  But in a “fight”, it is good to be an Aries.  

For example - I experienced a cancer scare 6 months after the birth of my son when I was 26.  I discovered a lump in my breast.  My doctor said I was too young for cancer.  (I bet they don’t say that any more.). Back in 1974 you entered the hospital the night before for a biopsy and you signed away your breast the night before surgery, because if the biopsy came back positive ... as you lay on the surgical table, they did the mastectomy before you woke up.  That night before the biopsy, a nurse came to my hospital room to prep me for surgery.  She asked me how I felt about maybe waking up with only one breast.  She was young - like me - but I remember telling her, “They can take the whole right side of my body, if it saves my life.  I have a son to raise.”  “Good answer,” she responded.  It wasn’t cancer then.  It is cancer now. I feel exactly the same today. My Aries traits will serve me well.  

The Me I Know 

I have worked in medicine most of my professional life - administratively mostly, but enough to know the short comings and strengths of medicine and the people who make these life and death decisions.  I am not in awe of doctors. I greatly respect their knowledge and training, but know they are people just like me, and they can make mistakes in judgement just like me.  Mistakes get made when you are over worked and fatigued.  

I believe medical care and decisions should be a team event: the patient or their advocate and the doctor.  I was my mother’s advocate for 8 years and many of my interactions with medical professionals were confrontational because some physicians didn’t function well as team players.  I challenged some decisions (or lack of them,) demanded further explanations until I understood, asked about options not offered, and made damn sure that my mom got the very best of what modern medicine had to offer while minimizing difficult procedures that would not benefit her in her fragile health state.  It was a balancing act.  I often felt like a warrior with the sword and shield on her behalf. They had to go through me to get to her and I did speak my mind without a filter.  (Aries ... another trait.) I was not out to make friends (and often didn’t), but I did get what she needed.  

 The Me I Don’t Know

This whole month I have wondered just where that “warrior” person has gone.  I am not good at being the patient and the advocate simultaniously for myself.  My husband isn’t good at this either.  Of course, two BIG differences between my mom and I are that she had dementia and could not speak for herself, and she had fragile health and would not benefit from unnecessary testing that would lead to a surgery that we would not do.  I have no mental limitations, and I am younger and healthier than she was - so I should be able to speak on my own behalf.  Mom needed an advocate. I should not.  BUT it is hard work to think and evaluate when your head is spinning.  Hard, hard work.  If this whole experience goes past Urology into Oncology, maybe by then the shock will have lowered a bit - and the “Aries” me will start to show up more frequently on my own behalf. 

Knowledge Is Power

Finally, I have a cousin who has been an RN for a very long time. Currently she is a Nurse Navigator and has experience working for patients as they wade through the medical establishment in pursuit of care.   In sharing this news with her, she sent me the NCCN Guidelines for Patients - Kidney Cancer Guidelines.  This very informational book created for patients provides all the details related to kidney cancer and the questions for doctors.  When I first got it - I was in the “I have a cyst” phase of my journey.  I did open it and began reading various sections - but as I skimmed through it - it made me a bit uncomfortable.  I was uncomfortable enough to close it thinking ... this is serious stuff. I set it aside because I had a cyst - not a tumor.  No need to upset myself.

The “I have a tumor” phase has begun.  Time to start reading and getting familiar with exactly what I have.  My personal comfort level now has no bearing on this situation.  I need to be armed with information.  

This could be a “war” and my Aries self needs to know the enemy!  


** I am not a believer in Astrologic signs.  But I can’t ignore the similarities between my personality and the Aries traits. I remember a conversation I had with my daughter on this subject.  She observed just how much her Astrologic sign matched her personality.  I read up on my sign.  I didn’t like all the “bull-headed” observations of the Aries Ram sign.  I observed that I wasn’t all those things!  She just smiled and said, 

“Oh mom, you are such an Aries!” 😂😂

Sunday, May 21, 2023

Get It Done Mode - Day 2, 3, 4, etc

Day 1 was May 2.  It’s been about 20 days since that time.  Every day since Day 1 has been a blur.

Soon after Day 1 I saw my GI Nurse Practitioner.  The realization that she found something that would have gone undetected for a few more years was not lost on me.  I thanked her over and over for her persistence and dedication even if this wasn’t what she (or I) was looking for. 

She confirmed many of the same kidney mass facts I already had googled.  If the kidney mass is a tumor, there is a 90% chance of malignancy.  Kidney tumors grow slowly so this little hidden “tag-along” has probably been there for years.  They are slow to metastasize and when they do they typically show up in the lungs and bones.  My CT scan of the chest showed normal lungs and no involvement of the lymph nodes that could be seen.  If the tumor is removed before it spreads, that is The Cure.  100% Cure.  No chemo or radiation.  No follow up treatment at all except to monitor the other kidney and to watch for a future cancer.  She said based on my family history this could very well be a cyst.  When I reported this conversation to my husband, the look of relief on his face was marked.  I realized he was carrying a great deal of worry behind of calm exterior.  I, again, repeated my belief that all would be well. 

Yet, every time I said this, I would silently add a little plea to who whoever was listening - “...and please make it so.” 

At home I was busy setting up appointments.  I needed a Urology appointment within 2 weeks.  I scheduled a CT scan of my abdomen and pelvis.  I scheduled an appointment with my primary care doctor to make sure he was in the loop on the new information. I had a boat load of personal commitments that needed to be moved or cancelled.  Priorities shifted.

I saw my primary doctor.  He repeated everything that I had already heard and researched.  He said additionally that the likelihood of a malignant tumor on my kidney at my age is very rare.  It is seen more commonly in younger individuals.  Block by building block the existence of a cyst became very real in my mind.  Cysts are watched, not surgically extracted.  Cysts are not typically life threatening unless there are a bunch and they begin to impact the function of an organ.  In my brain, this mass had to be a cyst.

Then it was my Urologists turn to tell me what I already knew.  My husband came to this appointment.  He usually does not go with me to appointments.  Trips into strange places are tough on him because he is blind.  But I invited him to go to this appointment because this appointment was different.  How different I wasn’t sure, but a small part of me failed to let go of the tumor idea. I needed another pair of ears with me.  Normally he would pause and hem and haw and maybe finally say, ok.  He quickly responded, “Yes.”  He knew this appointment was different too.

The Urologist walked into the room, sat down and got right to the point.  “I’ve looked at your CT scan and this is not a cyst.  This is a tumor!  Tumors have a 90% chance of being malignant. The fix is to go in and take out the tumor, the kidney and surrounding lymph nodes.  A biopsy is not done in advance.  A tumor must come out regardless of malignancy or the lack of it.  If surrounding tissues are clear, you are cured. Your kidneys look good.  No sign of polycystic disease.  You should do very well with one kidney.  You will be followed by a Nephrologist post surgery to maximize the function and health of the remaining kidney.  Questions.”   Don’t get me wrong.  I much prefer the direct, to-the-point approach.  And everything she said I knew from my research regarding kidney tumors.  But I had a cyst.  

Except I didn’t.

Numbness.  

I remember asking a few questions and getting answers.  When I asked, my husband had no questions.  I remember his face.  Tight and guarded. I did him no favors talking up the cyst.  She asked me a number of questions which I answered.  She changed my CT of the abdomen and pelvis to an MRI of the same area - with contrast, of course.  We scheduled a mid-June surgery date before we left the office.  It was neatly wrapped up and all that was missing was a bow.

We got in the car and I said - “Well that is not what we were hoping for.”  He said. “No.”   The ride was so quiet.  I was glad for that since I was driving and I needed to focus on driving.  At home he had a chance to gather his thoughts and he offered to help me in anyway he could.  We both knew his physical help was very limited by his disability.  But he would “be there” for moral support.  In my life I have prided myself on not needing anyone’s moral support.  I am stubborn and strong and able to follow my own path regardless of the actions or opinions of others.  A true Aries! But this time might just be different.

Once I got home and the fog lifted, I realized there were 2 questions she asked that I answered wrong.  Does cancer or kidney tumors run in my family?  I said no.  In fact a kidney mass was found in my mom in her 80s. At the time her health was fragile and we declined any further testing because we would take no action on the results of the tests. Do you have back pain?  I said no.  But I do have back pain and it is on the left side and lately it has become very much more noticeable and constant.  So I corrected those answers with the Urologist and she order a Nuclear Medicine Full Body Scan.  

That test was yesterday.  It looks at your bones and looks for “hot spots” that may indicate the presence of abnormal cell growth.  I am now 24 hours out since that test with no urgent phone call from my provider.  I do hope that is a good sign.

Preop office visits with my primary and the Urologist are next and I will come armed with my questions for the Urologist.  And the dreaded MRI ... it is a topic for another post.  If you have ever had a MRI I am sure you can guess why I am dreading this test.  But enough for today.


Saturday, May 20, 2023

Another Chapter - Day 1

Yes, it has been since October 2022 since I last visited my own blog and during that time I have wondered if I really have reach the end of my blogging journey.  But there is something so final about closing this down and saying goodbye to all this written history ... no matter what the reason.  During the unintentional blog break some health related events have been developing - slowly like the beginning of an ocean tsunami that is just a small swell out on the ocean but gathers speed and height the closer it gets to shore.  And once on shore .... well ... you know the rest.

It occurred to me that my personal thoughts on these health developments are best not expressed to my  family because my goal with them is to minimize the whole event so that worry does not overtake them (like it does for me in quiet times).  I want them to only focus on the positive.  This is just a bump in the road to get past and all will be well at the end. 

And if a family member does stumble upon these postings, please allow me and any other family member the allusion that you aren’t aware of these posts. I love you all dearly, but I can handle only so much reality at a time.  

My personal thoughts need to get out somewhere! The last time I dumped my deepest concerns anywhere was my time as caregiver for my mom - 8 years of my life that birthed this blog years ago.  Maybe this is the place I need to go now.

To start with the end (the current end as of this date as this is still developing) ... I have been diagnosed with Renal Cancer.  There is a large tumor on my left kidney that showed up by accident while being evaluated for GI complaints.  The CT scan was the last in a long line of tests started back in the fall of 2022 for GERD - ordinary innocuous acid reflux that was proving hard to resolve.  Just like the “photo bomb” pictures you see on Facebook and laugh about, this sizable tumor peaked its head out in the last shot of a CT scan of my chest.  The only difference was - it wasn’t funny.  The “accidental” nature ... my GI Nurse Practitioner was ordering the CT scan of my neck and before she handed the order to me, she stopped and said, “Have you ever had a CT scan of your chest?”  "Nope ... no CT scan of anything!”  "Ok, let’s just add that on to the order.”  Almost an after thought.  Sure why not, I thought - I am laying on the table there anyway.  Let’s take a look at everything!!

You know you are in trouble when you complete a diagnostic test, arrive home and 2 hours later you are getting a call from your medical provider - eager to talk with you.  Her phone number came up on my phone as “unknown” so I didn’t answer it.  She rang back again, and I didn’t answer it again, but this time she left a voice mail message.  I remember saying to my husband when I picked up the message - “Oh this can’t be good.  You never get medical results this fast."

And it wasn’t good.  A large mass was partially seen along with part of my kidney on the CT scan aimed at my chest.  After the call I remember feeling numb!  Very very numb.  Like this was happening to someone else.  In hindsight, I think the numbness was my body protecting me from panic. For about 2 hours I lived in that state.  She ordered a CT of my abdomen and pelvis and provided a referral into Urology - to be seen within 2 weeks.  She left me with a single lifeline to hang onto.  “Now this might be a large cyst. We can’t tell from this image. We need more studies.”  When the fog of numbness began to lift - a cyst made the most sense.  My liver had some cysts (but no one was concerned about that.). My family history was littered with polycystic kidney disease and although I tested negative in the 90s for that, maybe that test was wrong.  Yes, it most likely was a cyst rather than a tumor.  I began to feel better. All would be well.  

I had a number of family members to tell.  Although sending an email about such a topic isn’t ideal, that is what I did.  I couldn’t go through multiple telephone calls rehashing this same info fracturing my fragile “ok state of mind” in the retelling.  I did call my kids, however.  They seemed to handle the info more calmly than I was feeling inside - but maybe the 'numb thing' is hereditary, and they were a few steps behind me in reacting.  I made sure they had the same life line I did - this most likely is a cyst.  Look at our family history!! We really don’t know what we don’t know.  No need for concern.  All will be well.

All will be well.  Words I have lived my whole life using.  Words I prayed to God now would be true as I said them to the closest beings to me on the face of this earth - my children and my husband.  I did my best to make them believe those words.

And at the end of Day 1 - I made myself believe them too!






Wednesday, October 19, 2022

Checking In

It has been 2 months since I published a post to my blog.  And I have been absent from reading blogs.  My apologies to my readers who visit and wonder where I am.

Gaps in my blogging have happened a number of times previously since I started writing in 2009.  I will admit this is the most uninspired I have ever been since I have started.  September and October were pretty busy with a variety of commitments.  The chances of getting a blog post published were pretty low.  So maybe that is all that is going on. Does that mean I am quitting?  No - I cannot honestly say I am done with blogging.  And I still take pictures to save and share on my blog at some point.  But I have clearly slipped into a different level of participation for the near future.

But to give you a few snippets of what has passed this way while I have been gone from my blog.


COVID

I finally managed to catch covid in September.  I was pretty bummed, as I am sooo careful but luckily I got tested early and got the “magic pills” - the antiviral medication - in time to turn the infection off rapidly.  My husband caught it from me and he also got the antiviral medication quickly as well.  I struggled with some lingering fatigue for a week or two, but that finally lifted.  I feel very fortunate that I got this pesky and dangerous virus after medical science figured out ways to minimize and manage it. 


THE ESK REQUEST

So this conversation happened during a recent visit - while I was knitting ...

Esk:  Grandma is that for me?

Grandma:  No, Esk.  This is a shawl and little girls don’t wear shawls.

Esk: Grandma, will you make me a sweater?

Grandma: (sputtering and surprised) Sure, Esk!  I thought maybe you had out grown ... uhh ... or maybe lost interest or whatever ... uhh, .... so what color?

Esk: (and Grandma at the same time) Pink and Purple

 I set aside the two “promises” I made to myself this year: 1) finish the 5 works in progress I had sitting idle for too long and 2) avoid purchasing any new yarn because my stash is too big.  Unfortunately there is a significant lack of pink and purple in my stash, so yarn was purchased. And I launched into project number 6 - a sweater for Esk.


CLEANING OUT

In an effort to jump start my general malaise, I fell back on a tried and true method of refocusing my perspective: paring down my stuff.  Downsizing always makes me feel better.  Expanding the space around me by reducing the clutter usually sparks enthusiasm for other endeavors.  So far it hasn’t sparked much of anything, but it has felt good to exercise that “enough” muscle - getting my belongings and life expectations down to “enough.” 


CHANGE OF SEASONS

I am happy the weather is finally cooling down.  Of the 4 seasons, summer is my least favorite. I will miss that fresh produce that comes with late summer - but that is pretty much it.  Heat and humidity are not my friends.  Love that January time after the hubbub of Christmas has passed and the really cold weather sets in and a chance of a winter snow storm increases.


That’s all for now guys.  I can’t promise when I will be back again.  But I will try to keep in touch with bloggers whose commenting function allow me to leave a comment.  

Saturday, August 13, 2022

The Wood Puzzle


I wanted to try a wood puzzle so I put a request on my public Amazon Wish List for a wood puzzle.  I didn’t want any just wood puzzle.  I wanted pictures of my 3 original grand dogs who are all gone.  

My daughter must have seen it and made it happen.  Here’s a better shot of the front.  The 3 dogs are (clockwise from the biggest picture)

  • Grimace, the Pug, 
  • Grimace and Milo, the French Bulldog
  • Meathead, the English Bulldog
  • and Grimace, Meathead, and Milo.


And I love those 3 dogs still!  Miss them every single day.

But the real interesting part that others might be interested in is the back of the puzzle.  It really is an interesting and fun puzzle. Check out all the interesting shapes!!  This is not just any wooden puzzle.






I have glued this puzzle together and I plan to frame and display it at some point.  It 
is just a shame to hide either side of this puzzle in the back of a frame.
Any ideas??

Just a fun little post that I had to share.


Wednesday, August 10, 2022

Tate: Then and Now - and some Bull Dog Advice

THEN

Remember this adorable face? So many wrinkles.


And I think I showed this picture as well.  Check out that half blue/half tan eye!  He still has that.  He seemed to fill out some of those wrinkles. He is about a month older in this picture.


Such a sweet face.


NOW

Well, now 5 months later - at 7 months of age ... here is the current face.  It is a face that has matured some.  Still cute as can be.


He is only 7 months old.  He is not finished growing. From my previous experience of watching English Bulldogs grow, the head increases in size at the end of their growth so we will see what the few months bring. At present he weighs 37 pounds.  Compact.  He definitely has the bulldog tooth pose down pat.


ADVICE FROM A BULLDOG GRANDMOTHER

If you think you might want a bulldog or you know someone who might want a bulldog, you need to read on.  I feel people should be fully and honestly informed of what owning a bulldog can cost.   If I can educate even one person prior to purchasing an expensive bully (responsible breeders can charge from $4,000 to $10,000 for a puppy) and help them understand that the purchase price is just the beginning of your spending experience (you need very deep pockets to keep most of them healthy,) then I will have helped this breed stay in their forever homes. People give up these dogs because they can’t afford the medical bills.  How sad for the bulldog who had absolutely no control over their breeding and inherited health issues ... and now are surrendered to a shelter or rescue group - or worse yet, euthanized.

Anyone who has owned an English Bull Dog knows that health issues are pretty common with them.  In fact, I would guess that a life long perfectly healthy bully is fairly rare.  My daughter has pet insurance for Tate as she did for her previous French Bulldog, Milo.  Bulldog health insurance is at least twice the cost of insurance for a normal mixed breed dog.  The medical history of these bully breeds are reflected in the high cost of their pet insurance. 

Just one example from my own family:  My daughter had a French Bulldog before Tate. Milo lived a long life, dying around 12 years of age of pneumonia, but for all those years he had excellent quality (and expensive) health care.  He was well cared for and at his death - other than gray hair on his muzzle and paws, he looked at strong and fit as he did years before.  My daughter spared no expense because she loved him dearly and accepted the full responsibility for his health.  But Milo had back surgery at the age of 6 - without it he would have lost the use of his rear legs within 2 years.  And before the back surgery, he had to have nasal and throat surgery to correct the problems related to his brachycephalic airways (“pushed in face” problems typical for English Bulldogs, Frenchies, and Pugs.) That surgery assured that he would have no problems recovering from anesthesia after a surgery. And before those two surgeries, he needed an MRI to clearly identify the back issue for the surgeon.  She had pet insurance but it covered only 80%.  The grand total for all of that was close to $15,000.  Yes, Fifteen Thousand Dollars.  Milo also had skin allergies that he took medicine for his whole life and GI problems that required expensive prescription dog food. He also saw a veterinary ophthalmologist for an eye infection that would not heal - he had months of care for that condition.  I do not exaggerate when I express the commitment my daughter had to give him the best quality of life she could.

In talking with pet owners who showed an interest in Franchies while waiting with Milo in a Vet’s office one time, I warn them that Frenchie medical care can be expensive.  Typically these folks who have never owned a bully nod in a knowledgable way saying ... "yes, yes. - all veterinary care is so expensive now-a-days” as they look down at their own pet that is not a bully.  Then I give them the medical litany of Milo’s history and you can see their eyes glaze over with the realization of what “expensive” actually means in a pure bred bulldog with problems! Bulldogs are really are a luxury if they are provided proper medical care

At the age of 7 months, Tate has started his own medical saga.  He had the normal neutering but he also had a small hernia that needed to be repaired.  Then his right eye had a eruption of Cherry Eye - a large swelling of the tear duct gland in the eye.  It seemed to come and go, but then it didn’t go.  And his left eye erupted as well.  So my daughter arranged an appointment with a Veterinary Eye doctor.    Yes, it could be corrected,  it can come back, and this condition is apparently inherited.  She scheduled the surgery, and now, $4,000 later his eyes are back to normal. But his medical chart is off to a fast gallop before his first birthday. We are hopeful that this ends his medical issues, but we aren’t being naive either.

None of the problems mentioned are exclusive to bulldogs, but the frequency of these problems is more the issue. I won’t get into the problems of irresponsible breeders, or the terrible problem of over pet population and the high rates of euthanasia because of it.  Adopting a specific kind of pet is a personal choice - but it should be an educated decision and you should have the commitment (and the money) if you choose a bully breed.

With that all said, our family LOVES all our pets.  Our pets are family members and my kids (and now me) LOVE these bully breeds a lot. All of them.  They are wonderful companions ... funny, inquisitive, and curious, rambunctious, couch potatoes at maturity and, above all, stubborn. 



But many come with inherited conditions and pet owners really need to be aware.  If you take a bully into your heart, you take everything that happens to the bully into your life and your wallet.  I agree the same can be said of all pets, but I guarantee, a bully breed will hit your wallet much harder.   

Our family has adopted our fair share of shelter pets with no pedigree and our commitment to them is just the same.  So the point of this Grandma Advice was not to prize one choice over another.  Just be sure to do your homework before you adopt any pet - know what you are getting and what will be expected for you for your pet to be happy and healthy.  

It is worth it!  Every cent.  They give back more love and companionship than you could possibly imagine.  But if it is not for you, I get it and respect that decision as well.




Sunday, August 7, 2022

Thank You

Thank you for the kind comments and observations to my most recent post.  

I am kind of stunned that my regular readers all commented.  I kind of expected that some would have moved on to other more active bloggers.  

I have a camera full of pictures, taken with the idea of sharing - so I guess that means I am not quite ready to stop blogging.

  😂😂😂

I did make a discovery recently.  Looks like Blogger has finally deleted all my “email subscriptions” to the blogs I follow.  Don’t know when it happened, but I don’t get hardly any notifications in my Google Email In Box that a blog post has been published, and as a result I have missed a number of your postings.  Blogger warned us that would happen long ago and when it didn’t happen to me I just ignored them.  I am in the process of rebuilding my “follow” list on Blogger where I create my blog posts - in the Reading List option.  Truthfully I would love to put my blog on another platform, but I just can’t stand the thought of starting over and leaving behind this archive of blog posts.  My caregiver journey with my mom resides here and although it is buried deep in the past history of this blog, I know it is there even if it is no longer seen by anyone other than myself.  That experience was 8 years of my life and it is a major contributor to the person I am today.  I sometimes check back and remember - look at the pictures and generally just “visit” with mom ... so here I stay.

Working on other posts.  Be back soon.

Elaine