The Beginning of the Journey

On Tuesday, January 6^th, my husband rode his bike to work like most other days.  I remember him smiling and waving goodbye to me as he rode off.  It’s only a 10-12 minute bike ride to work, so it’s not too strenuous.  Later in the day, I received a message or two that he was feeling kind of bleh, but he is so busy at work that we didn’t have time to verbally talk.  About 4pm, he called me.  He was straining quite a bit and trying to tell me that he was having immense and extreme pain in his right flank (right back side of his back).  Just as I started to ask him a question, he grunted and the line went dead.  Within two minutes, I received a phone call from his boss who told me that James was in extreme pain and they have called 9-1-1.  He told me that he would call me back once they determine what hospital he would be going to. 

From James’ account of the events, he told me that he was experiencing severe pain in his right flank.  He asked his co-worker to look up if salt caused kidney pain, since he had been eating sunflower seeds all day.  Less than 30 seconds after asking his co-worker to do that, the pain hit him harder and he yelled out in pain.  He stumbled up from his chair and staggered to his boss’s office, just two doors down.  He fell into the chair near his boss’s desk and with labored breath told him to call 9-1-1.  After calling for the ambulance, James attempted to do anything to alleviate the pain and went down to the ground.  He was sweating profusely, even sweating through his shirt, and had to rip his tie and belt off to feel like he could breathe. 

When the paramedics arrived, their attempts to maneuver James into a sitting position or even a position to take his blood pressure, caused James excruciating pain.  After identifying all of his symptoms, the paramedics believed that James was suffering from kidney stones.  By all accounts, they are extremely painful and taking him to the hospital was the best option.  James continued in extreme pain and so while in the ambulance, the EMT’s gave him a small dose of Fentanyl.  James described the affect as a long 30 seconds to take effect, but a beautiful feeling, overall. 

I had arrived at the hospital before the ambulance even arrived so I was able to see James be taken from the ambulance.  As he got closer to where I was standing, I was struck by how white he was.  He was so pale that his lips had minimal color.  He, however, was feeling no pain but was exhausted from the 30 minutes of excruciating pain he had endured. 

While at the Emergency Room, the doctor completed a urinalysis and found blood in his urine.  He told us that that was still typical for kidney stones, but felt that a CT scan would know for sure.  After another hour, James was taken to have a CT scan.  A short while later, the doctor came out to tell us that there were NO stones found.  He did not have kidney stones.  However, they did see 3 masses on his kidneys instead.  One on his left and two on his right.  The suggestion at this point was that a follow-up CT scan with contrast (dye) would be warranted to see things more specifically. 

At this point, the worry set in. 

We got an appointment with the doctor’s office a couple days later and I could tell that she felt that it was important enough to do a simple exam and the refer out to the urologist who was an expert and who would request specific tests. 

The worry continued. 

Life at home was filled with anxiety, sadness, overwhelm, tears, questions, research and prayers.  James was deeply struck by anxiety and concern over the future.  The anxiety was almost debilitating.  The nausea was immense.  While we tried to make things as normal as possible for the children, there was still a heavy air of sadness and worry.

……

As scheduled, James went and had his CT scan with contrast.  My emotions were full and I felt the worry of what could be.  I held them in and tried to remain strong for my husband, who was still feeling the effects of his anxieties.  Tears seemed to flow from both our eyes randomly and without any catalyst.  They just fell because the reservoirs were full.

We awaited the results. 

With new technology, we knew that the results would be posted online and we could read the radiologist's report whenever they were posted.  After one week, the results were posted.  We scanned the report and saw that James is in relatively good health.  Then we saw the words, “likely malignant” and “refer for tissue analysis”.  Sigh.

The worry continued.  We set ourselves up to try to wait the 2+ weeks it would take to see the doctor for a consultation regarding these test results.  It became difficult to imagine waiting 17 more days.  

As religious and spiritual people, we felt the need to be connected to the spirit more so than we were.  For us and for James specifically, this meant more time on his knees praying and doing things that connected him with the spirit more, including good music and good books.  He also felt the strong desire to connect more individually with each of his children.  Worrying so much over his future had called into question how much of their future he would be present for.  This drew him closer to his children in ways that only he can describe.  He also felt the great desire to attend the temple – a building for us (in the LDS religion) that is sacred and peaceful and where the spirit is often felt when the heart and mind are searching.  These efforts in searching for a deeper connection had a strong impact and although James was physically still experiencing pain and fatigue, his spirits were lifted and he felt more hope.  This high, if you will, had its ebbs and flows, and there were still moments of anxiety and fear, but overall, he was feeling more ready to take on the journey of “likely malignant”. 

Over the 3 weeks since the incident first happened, James had lost 15-16 pounds.  Not the greatest way to lose weight, but we hope his appetite returns. 

Finally, the day of the consultation with the doctor.  The appointment time was moved back 45 minutes, to 4:45pm.  An entire day to wait.  Both James and I kept ourselves busy to stay distracted.  Him at work and me at home with our daughter, who at 4 years-old is a good distraction.  Tinges of anxiety rested with us during the day and in the car ride to the urologist’s office.  Finally, the doctor came in and he explained from the beginning that he appreciated our willingness to push the appointment back and was apologetic for changing the appointment time, but felt it was important that he meet with us as soon as he could.  Both James and I later admitted that we felt our back tighten at that moment, preparing ourselves for further news. 

The doctor was wonderful and he explained things so well.  Cutting to the chase, as he put it, he let us know that the tumor on James’ kidney is of the highest likelihood to be cancer, as it is a solid tumor, and that his recommendation is immediate surgery.  

Even as I type this, the emotions hit me.  James, of course, felt the sting too upon hearing those words.  True to form, I held my emotions back.  For some reason I felt that I did not want my husband to be affected by my emotional weakness.  James dabbed at his eyes for a short moment.  The doctor then went on to explain all of the details and the procedures of how he would manage the treatment.

First, he said that renal cancer has no cure.  And it does not respond to radiation or chemotherapy.  Another sting.  He said that the common procedure is to do surgery and cut out the tumor and surrounding tissue.  The surrounding tissue will be tested for further cancerous cells.  He said that we caught it early. 

Second, he told us that since James is in good health and physical condition and is young, he has a good prognosis.  He will do follow-up appointments for 3 years to see if any more grows, but after that, if all goes well, he will be good to go.  After surgery, James will be down for about a month, but he hoped for good results due to his age and health. 

Finally, he told us that he is the expert in this area, both geographically and with regards to dealing with surgery related to kidneys and renal cancer.  Strangely enough, he and James have the same birthday, thus the doctor felt a connection to James.  This created a connection for James, too and he felt good about it.

James feels the weight of it, but feels the hope of it, too.  I am glad that he feels some alleviation finally.  Overall, it’s good to know what you are dealing with so you know what steps you need to take. 

Surgery will be early March.  Just after my birthday and after my son’s birthday, so we will have a chance to celebrate good things before we turn to helping James heal.   The funny thing is, my mother finished her last radiation treatment 2 days after James was taken to the ER.  I spent 6 months taking care of her and helping her to deal with her cancer diagnosis.  Perhaps, just maybe, my time with her was my training to prepare to help my husband.  If so, I hope that I stop at 2 patients. :o)