Chapter 3 – It was the beginning of a long storm.

…Tropical storms or hurricanes can last for days and days, as long they stay over open water. Hurricanes can often live for a long period of time—as much as two to three weeksSource

It became a whirlwind of doctors from almost every body system. Neurologists, Oncologists, Renal, Infectious Disease; you name it, we had it.  At this point I remember thinking that deep down all of these people really wanted to help Roger.  Really, they did. But sometimes I felt like they were looking at him as a new toy, a new challenge, a new puzzle, a new project.  I understood that they saw so many people and managed so many cases, and it was their job to assess, diagnose, hypothesize, and treat.  But there were so many people looking at the mechanics of his body and not at his spirit.

I don’t mean that they didn’t care; they did.  They were concerned.  They just had a huge workload.  I don’t have a recommendation or solution to this.  It’s just the nature of things.

From the beginning, Roger never had a seizure that we were aware of.  He never had any stroke-like symptoms.  I became more thankful of this as things progressed.  In fact, it was one of my blessings I counted each day.

They put him on anti-seizure meds “just in case.”

By July 20th we had met the Oncologist.  Dr. Hess said that because Roger was a transplant recipient, he was predisposed to infection and cancer because of the anti-rejection drugs he was on.

Why didn’t I process this piece of information better when we first received it? Sure, I knew that he shouldn’t shake hands with sick people.  He shouldn’t stay out in the sun too long because he might get skin cancer.  He should avoid germs because his resistance would always be down.  Maybe I was so elated about getting the liver that all of those future “bad case scenarios” didn’t hang over my head like the sword of Damocles.  Little by little it was sinking in.  Roger was about to be diagnosed with some sort of brain cancer, and our lives would be changed forever.

Roger asked, “Doc, could this be just the way I am?  The way I scan on MRIs? I understand the light and dark on my scan.  Could this be just an anomaly? Could it just be a fluke?”

The doctor answered. “No. If 100,000 people on the street were scanned, the likelihood that 100 would have scans like Roger’s and not have a tumor would be extremely low.  It is highly unlikely that this is just a fluke. We need to biopsy to get confirmation, but I think it is glioblastoma or lymphoma.”

There.  It was said.  It was out in the open and like Pandora’s Box, there was no stuffing it back in.

  • The infectious disease doctor said that it was most likely not an infection, but they also suggested a biopsy would give the definitive answer.
  • The kidney people were concerned about the dye in the MRI.  Roger’s kidneys were typically damaged from all of the stress during the transplant; they explained that there might be a permanent skin rash with the contrast dye.
  • The neurology team said that the tumor looked like it was left frontal, behind the eye. It might not be possible to biopsy; the neurosurgeons would have to decide.
  • What we learned:  The neurologist is not the same as a neurosurgeon.  One diagnoses, the other actually does the surgery. In the pecking order, the neurosurgeon is top dog.

I said that we didn’t want to leave the hospital without a diagnosis, and they agreed whole heartedly. Roger shared with many doctors that he was not afraid to die, having made his salvation sure when he was 16.

On July 21, Roger was very aware that this might be serious and told the neuro team that he understood this. They were glad that he understood. He was having a great day and just wanted to get out of the hospital. Time goes slow when you just sit. They planned to do the biopsy this day; however it’s like waiting in an airplane on the tarmac to take off….you just have to wait your turn for an opening.

Some funnies:

  • PT guy asked him to twirl about two different directions. We thought he was going to proceed to “step-bump, step-bump, kickball chain, kickball chain” like the trooper that was checking to see if a driver was drunk.
  • One neurologist had him doing the famous (or infamous, depending on your viewpoint) subtracting backwards, and other stuff with numbers. When Roger said he just couldn’t do it and that he wasn’t good with numbers, the doctor asked him what he did for a living. “I’m an IRS auditor.” We all cracked up.  Here’s a video of Roger trying to say the months of the year backwards.  Click here.

July 22nd brought this answer:  No infection.

I have decided that students and residents who walk around the halls with their attending physician look like a mama duck and her ducklings.

A PET scan was ordered before the biopsy, and it would look for sugar in the body system. The team of ducklings explained everything and left, assuming that the PET scan would be later that afternoon.  One duckling immediately returned and said in a thick foreign accent, “All we are so very sorry.  The drip that you are on for fluids has sugar in it.  Too bad.  You have to have scan tomorrow.”

By this time we were getting frustrated with the pace of everything.  It appeared to us that the biopsy was being delayed and that meant a delay in the official diagnosis and treatment.  I shared that with the doctor and she agreed, adding to remember that it is quicker to get tests completed in the hospital rather than as an outpatient.

I hope you have picked up on how bored we were in the hospital.  At the beginning Roger was not attached to any machines, so he could get up and roam. In fact he kept his regular clothes on most of the time.  To help pass the time I decided to play a card game with him. I picked Phase 10, and to this day I’m not sure that it was the best choice.  Imagine explaining the rules to a real complicated and lengthy game to a man who 1) doesn’t like card games to begin with, and 2) has short term memory loss.  Yup.  You just smiled, didn’t you?  We had the nurses and techs in stitches.

Phase 10 1Phase 10 2

The neurosurgeon came in and established rapport with us.  Dr. Dunn was very personable and treated Roger like he was his father.  That was comforting.  The plan was to do the biopsy soon; however, there was some discussion on whether to do an MRI with contrast or not. Here’s a video that will show how confused we were with this process.

Later that afternoon, Roger said that he thought we were walking around St. Louis in the afternoon.  He asked how we were going to pay for the hospital room, wondering if the church would pay any of it. His mind was still mixed up.

On July 23rd they decided to do a lumbar puncture.  As Roger read the bottom line for signing the permission, he saw, “I have read the above information and understand it,” to which he said, “Wait!  I haven’t read it.”  So the duckling-doctor said, “I’ll be glad to read it to you.”  And she did. EVERY. SINGLE. WORD. I bet they won’t forget him.

This journal entry shows that I had some insight into the future:

“I am tired, and I just can’t help but think this is just the beginning of a chronic tired I will be in the next months.”

There was some hesitation about performing the biopsy.  There was a obvious risk, and the neurosurgeon said if Roger were his dad, he would 100% wait to do the biopsy.  He said, “No surgery is the best surgery.” If they can get the information they need through a lumbar puncture, then that’s good.

To break up this narrative I added some pictures.  Click on them to enlarge and enjoy!

Another funny:

There were cameras in each room on our floor because patients were in various stages of impaired mental capacity. Lisa was playing her ukulele, and Roger had just come out of the bathroom. He began busting a move and kept it up long enough for the “all seeing eye in the ceiling” to come over the intercom with “I see you Mr. Weldy…dancing in there!” Oh, we had THE biggest laugh over that. Watch Roger “bustin’ a move” here.

On July 25th the surgeons said it appeared that the lumbar puncture did not yield enough cells to make a determination about what was going on in Roger’s brain. Roger’s anatomy made it a difficult procedure. So, the lesions in his brain were to be biopsied late Monday morning. The surgeon said that he would work with the pathologist and take as much tissue as necessary to make a diagnosis.

He also said not to make any assumptions until we had the results. I told him that the Internet gave anyone enough information to make a diagnosis about anything, and though we had searched things, we were trying to be ignorant about the possibilities. We still remained upbeat and had a good testimony of how God kept us calm in the storms of life, though we were certainly aware of the potential gravity of the situation.  Psalm 18:6: In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears

The next day I arrived to find that things were worse with his mind.  He seemed paranoid, wanting to prop a chair against the door so people couldn’t come in. BradshawsOur good friends, the Bradshaws, came to visit, but I wasn’t sure Roger really knew who they were.  He did talk about getting the music list ready for church.

GW SW music manI had a nice diversion that evening. Lisa stayed with Roger, and Scott took me to see “Music Man,” a community theater performance.  When I returned, Lisa said that she thought Roger was gradually getting worse. He wanted to give food service his urine, and he even told her to “back off” twice.

The next morning I woke up feeling that my husband had died.  Not physically, but mentally.  He was gone and I would never get that old Roger back until we were in heaven together.  I felt numb about it, but my mind also strayed to the “what if’s,” and “how do I plan for the future?”  Roger has repeatedly said that he wasn’t afraid to die.  So that’s ok.  It’s the non-living that I’m worried about.

This entry was posted in Barnes Jewish Hospital, Brain Biopsy, Brain Tumor, Card Games, Diagnosis, Glioblastoma, MRI. Bookmark the permalink.

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