It's Complicated...

Indeed, it has been a very complicated 2 1/2 years.  I was diagnosed with metastatic kidney cancer (renal cell carcinoma) on October 24th, 2007 at just before ten o'clock in the morning.  I was told by a urologist that the right kidney contained a 2.4cm, solid renal mass and was intraparenchymal (in the meat of the kidney).  I was referred to Cleveland Clinic for a laparoscopic partial nephrectomy.  Also noted on the CT was a small area in the inferior tip of the right lobe of my liver.

I was seen by Dr. Gill at Cleveland Clinic on November 20th, 2007.  A Standard 3-D Renal Protocol CT Scan was performed and revealed a 2.2cm partially exophytic (outside of the kidney) enhancing lesion at the anterior medial aspect of the mid kidney (right).  I was told this tumor was sitting on top of the renal vein and artery.  Surgery was scheduled for January 2008.  Also noted on the CT were multiple small liver lesions - and no enlarged lymph nodes were identified.

Between October 24th, 2007 and January 8, 2008 I applied for Medicaid - only to find out that my husand and I don't meet the federal criteria for a 'family'; we don't have minor children in the home - it is just the two of us.  The caseworker told me quite bluntly to either hurry up and get pregnant or divorce my husband - that either of these would help me qualify for Medicaid.  In the meantime, I was told to also apply for Social Security Disability (SSI).  My approval for Medicaid hinged on my being approved by SSI.  Pregnancy would have been the stupidest thing to do considering I had cancer (and was not an option due to a tubal ligation procedure performed in 1991) and I was not willing to divorce my husband.

During my fight for Medicaid I also contacted every agency and organization that is supposed to help those with cancer who can't afford to pay for treatment.  Every call - every email - every letter - they were all brick walls.  I was also fighting with Cleveland Clinic during this time.  Even after having applied for their Charity Care/Hardship Application - and with a gross monthly household income of just under $1,000 - we were told that we would be responsible for 30-40% of the total cost of the surgery.  We were asked to pay an initial deposit of $8,000 to lock in the surgery date of January 8th, 2008 - with the balance due by the date of surgery.  The nephrectomy was estimated to be in excess of $60,000. 

December 2007 also consisted of a stress-test where my EKG revealed upsloping ST-T wave changes suggestive of ischemia.  In addition, a new CT scan was performed the day after Christmas.  This scan showed the tumor in the right kidney to be 2.9cm with probable thickened septations, numerous scattered hepatic lesions not compatible with cysts and highly concerning for metastatic disease.  Also noted were enlarged level V lymph nodes bilaterally at the C5 level (neck) and soft tissue nodules within the fatty tissues superficial to the right trapezius muscle and concerning for metastasis.

On January 8th, 2008 - instead of being in the OR at Cleveland Clinic undergoing a nephrectomy, I was on a plane about 30,000 feet in the air bound for Wichita, Kansas.  After Cleveland Clinic cancelled my surgery for inability to pay up front, I began preparing to die and started my Bucket List - an idea I got from a movie of the same name that was due to release in theaters.  We visited one of our local funeral homes where I made my arrangements and I drew up a Living Will and Durable Power of Attorney - then I started on my list.  Thanks to my parents - my biggest wish was to visit my sister and her family in Wichita - a place I hadn't been since I was a teenager.

Yet another CT scan was performed in February 2008.  This scan showed the kidney tumor to be 4.1 x 3.0 x 2.0cm and extending into the perinephric space.  The liver lesions were stable and more enlarged lymph nodes were noted in the carotid spaces bilaterally.  It was during this time that I was told my prognosis was poor - that I had a year to live, maybe two years if I could get on Sutent.  Because I had no insurance and no pathology report, I couldn't get an oncologist to see me - and there is no Sutent without an oncologist.

By the time March 2008 rolled around - my applications for Medicaid and SSI were denied. SSI denied my application for lack of a pathology report. I had been told by several urologists, one hepatologist and one radiologist that biopsies of the right kidney and liver were out of the question due to location (tumor in right kidney sits on top of renal vein and artery - liver lesions are too deep) and size. 

Shortly afterwards I was sent for a PET scan - and received the sort of report that anyone with cancer wants to hear - that it is no longer there.  The radiologist compared my prior CT scans to this PET scan and stated to me, over the phone, that the cancer WAS there, but is NOT there now.  It was a miracle.  This was March 21, 2008 at 10:45am.  This was the moment that I got my life back.......no more cancer 24/7......I was finally FREE!!  Or so I thought........

Despite what the radiologist told me over the phone - and told my clinic doctor over the phone - I was still experiencing some flank pain.  Granted, I had began to physically feel better prior to the PET scan - but I still wasn't feeling like someone who was suddenly healed.  This was a problem.......a problem that we didn't know about until December 2008 - 9 months after my PET scan and the 'all clear'.

On December 10th, 2008, a CT scan was performed.  This scan showed the kidney tumor to be 3.8 x 2.8 x 2.8cm and was described as being a complex mass - possibly Stage IIIA.  Also noted on the CT were multiple lesions in the right and left lobes of my liver as well as retroperitoneal (upper AND lower abdomen) lymph nodes being stable compared to prior examination.

The Problem - there were many.  First, my doctor never received the written PET scan report from March 2008.  I was so happy to hear I was healed that I never even bothered to go get my copy.  Second, a retroperitoneal ultrasound had been performed in June 2008 - and my doctor told me everything was ok.  Again, if he wasn't worried then I wasn't worried - so I didn't bother with picking up these results either.  Third, there had never been any mention of enlarged retroperitoneal lymph nodes on prior CT reports. 

The results that were never actually read by my GP or me:

The March 2008 PET scan showed the right renal mass to be 2.8 x 2.1cm and 20 Hounsfield Units - but with no abnormal activity.  In the end - it isn't unusual to get a false negative when using a PET scan for renal cell carcinoma.  Would have been nice to know that going into the scan.

The June 2008 ultrasound showed a complex, partially cystic right renal mass measuring 2.6 x 2.5cm.

I never actually read these results until December 8th, 2010 - two days prior to the CT scan that snapped me back to reality.  I learned a very valuable lesson - ALWAYS get a copy of your diagnostics for your own records - AND read them for yourself.  They aren't hard to understand - most radiologists use a bunch of jargon in their main descriptions and then summarize their findings at the end. 

Since December 2008 I have had numerous CT scans averaging about every three months.  My current status is Stage IV renal cell carcinoma with metastases to the liver and retroperitoneal lymph nodes in both the upper and lower abdomen - with numerous nodes and nodules peppered throughout my neck.  The tumor in my right kidney continues to grow and most recently measured under 5cm and was described as a multilobular and septated cystic mass.

It's Complicated because I have no insurance - am not eligible for Medicaid or Disability - and am under the care of a General Practitioner.  Yes, I have a urologist - but he is only interested in seeing me if I can get the money for surgery and get surgical clearance from five different specialists.  To say it is complicated is actually an understatement. 

What I have in my favor is my faith in God - a slow growing cancer - and a VERY strong will to live.  It is no mistake that I am still here - as a Stage IV RCC patient - some 2 1/2 years later.  All along I just assumed I would have died by now - and I haven't.  It doesn't mean that I won't die from my cancer someday - but that day is NOT today.  Not yet.

I have reached a certain level of peace and acceptance of my cancer.  I have no choice.  I can deal with it or drive myself crazy.  Crazy is as crazy does - so I choose the route of sanity - and for me that is acceptance.

So yes, It's Complicated......but aren't most things in life.  It is because of this that I have changed my blog from being The Accidental Tourist to Fat, Sassy & Metastatic - why I have quit smoking - and why I am now ready to revamp my Living Will and Bucket List.

Life is for the living......and I have to make some changes so I can live my life quicker than I thought I would have to.