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.