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.

Just checking in

Here I am, 3+ weeks out from surgery, heading towards 4 weeks and doing great (well ... great-ish).  My incision is healed, I can drive again, walk as much as I want and do most things by myself.  That is the “glory" of laparoscopic surgery with robot assist!  While I am still limited in lifting stuff and I can't vacuum this very dirty house yet (which only bothers me - not my husband - because he is blind), I am feeling very fortunate to be living in an area of the country where this advanced technology and skilled surgeons using this technique are readily available to me.  Add that to my very supportive family, and you have a near perfect experience.

But it is “near” perfect only.

The remaining kidney has been a little slow in picking up the pace of its job.  The kidneys are very hard working little organs that don't get enough credit for the work they do - until they don't and then you got trouble. In fact, you would never know there was a problem until you are in serious trouble.  My remaining kidney (I will call her Leona going forward - 😁 in honor of my mom, her middle name, who suffered with kidney disease most of her life and died of kidney failure and dementia), Leona was expected to take a dip in her functioning, according to the surgeon right after surgery.  And she did dip by about 20 points off normal function.  Two weeks later she had dipped another 5 points.  hmmm.  But some other values were abnormal and my surgeon asked me to make a few adjustments to my eating and 4 days later I repeated the lab work.  Previous abnormals were corrected but Leona was now down about another 5 points ... treading very close to levels of kidney failure.

Hey ... what gives, Leona!!!

But my surgeon and my internist both were ok with the values, so who am I to argue.   My own research indicates that kidneys are slow to adjust to change and that Leona could take months, maybe a year or more, to reach a level that is normal for me.  In the meantime, I have to eat healthy (well ... I will have to eat healthy the rest of my life, of course,) drink a lot of water every day and get various labs and diagnostic tests to track Leona’s progress.  And while I wait, I feel pretty good.  I have to remind myself that all is not yet back to normal and won’t be for some time.  But to look at me - I am good!

And I think I mentioned that they also discovered that I have an enlarged liver.  Today I saw my GI doctor and we had quite a chat.  They will be tracking this liver now.  And, of course, there is a diet for that liver (that is somewhat different from the kidney diet that I must also follow) and that discussion resulted in a referral to a speciality nutritionist who can help me sort through both conditions.  I’ll table that discussion for another post - after I see her in a few weeks.  My GI doc said that enlarged fatty livers are a quiet pandemic in our country due to SAD - the Standard American Diet.  It is known that 30% of our population has this condition and there are probably another 10-20% who have it and don’t know they have it.  She said she even has it!  Without diet and exercise intervention the condition can develop into scarring on the liver and lead to cirrhosis ... and eventually liver failure.  An special MRI test called an Elastography has been ordered.  It will look for any scarring or cirrhosis.  She feels pretty sure my liver is ok for a number of reasons - one of which is the normal contours have not changed - it is just too big.  A good sign.  That test won’t happen until September when I am entirely healed.

I haven’t come up with a good name for my liver yet.  I am open to suggestions. 😃

So that is my current status.  I’ll be back sooner rather than later - I have many many pictures on my phone of stuff I wanted to post to the blog. It has just been a very busy time.

Talk again soon.

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!” 😂😂

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.

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!