After our referral to Shands an appointment was made for June 5. This was after we learned of Dave’s biopsy results on May 30th. While five days between receiving the results and waiting to learn what will need to be done doesn’t seem like a lot, it was enough for my mind to work overdrive with all sorts of scenarios as to the possible outcome. Dave was scared of losing his tongue. He had already been dealing with this for several months so for him it was like his worst nightmare was unfolding in slow motion.
If I learned anything the last five years it is that I don’t have to walk through this journey alone. I can lean in to the comforting arms of the Lord, which is what I choose to do. There was lots of journaling between the Lord and I and what He shared with me gave me such peace and comfort that I can draw from no matter how difficult the situation becomes. I can bring everything to Him, my doubt, my fears, anger, desperation and lay it at His feet. He can handle it and He desires me to come to Him before anyone or anything.
The date for our appointment finally arrived and we drove the two and a half hour drive to Jacksonville. It was a long, quiet drive. I tried to work in the car while David navigated the roads. It was hard to concentrate on my work as my mind played out all sorts of scenarios as to what the doctor might say. Everything from this will be a simple procedure to there is nothing that can be done. We felt like we were going to the lions den and had no idea what to expect.
We parked the car at the clinic where we would have our appointment. We checked in and then sat in the waiting room. Because this area was for head and neck patients, I watched every person who walked in the door. Do they have cancer? Is it the same cancer as Dave? The waiting room wasn’t too full but even a few people who have to deal with this awful disease is too many.
The nurse called us back to a room that was no larger than a janitor’s closet. Dave sat in the chair that was similar to what dentist use. She proceeded to take his blood pressure and ask questions. Once she was complete with the vitals, she said the doctor would be in shortly to see us. Shands is a university hospital, which means it is a teaching hospital. Fortunately, I worked at a university hospital back in the day so I understood how they worked. Because some of the doctors are students, there will be groups of people (residents) reviewing the case.
In walked a doctor who was one of the residents. He proceeded to ask the same questions as the nurse. He then put on a pair of gloves to exam Dave’s mouth. He began to take copious notes. He explained he would leave to confer with the doctor and be back shortly.
Before he left the room he asked, “Mr. Robertson what hand do you write with?” Dave explained his right hand then the doctor left the room. Dave and I looked at each other as we thought that was an odd question to ask. We waited for the attending (this is the teaching doctor) to arrive.
The door finally opened and in piled three resident doctors, the attending and a clinic manager. How we all fit in this tiny little room, I have no idea. The attending doctor introduced himself. All the residents gathered around as the attending began to exam Dave’s mouth. He started speaking in medical terms and the residents jotted feverishly. Once he was done with the exam, he began to share with us the treatment plan for Dave.
“We will need to do surgery to remove the tumor. It will require us to remove a little more than half his tongue. We will do immediate reconstruction surgery by taking the skin and this vein, this vein and this vein from Mr. Robertson’s left arm. We will also remove the lymph nodes on the right side of his neck. He will be in the hospital a minimum of a week and he will be on a trach in his throat and a feeding tube through his nose. Once he leaves the hospital, he will continue with a feeding tube and will require speech and possibly physical therapy. We will send off the portion of the tongue we remove for biopsy and it will take about two weeks to obtain the results. About six to eight weeks post surgery, he will need radiation and possibly chemotherapy but we will know more after the surgery. Do you have any questions?”
Dave and I just sat there stunned and looking at each other. I couldn’t even comprehend what he was saying and I know poor Dave couldn’t. All he could say was, “What I feared is happening. I’m going to lose my tongue.”
We literally couldn’t form any words much less questions. I know the questions seem obvious but we literally couldn’t think. Our brains were paralyzed.
“We know this is a lot of information to take in and questions will come once you leave. Here is my number. Call me and ask away,” explained the clinic manager. Everyone single filed out of the room and we followed behind. As we exited through the waiting room, it was now filled to the brim with people. I’m not sure if they all had cancer but it was overwhelming to see that many people.
Dave and I took a long walk to the car. We get in and shut the door and look at each other in amazement. We didn’t know what to say and I could see the terror in Dave’s eyes. “Why don’t I just take a gun and shoot myself and then all this will be over,” he blurted out.
“No!” I shouted.
“I’m sorry honey. I don’t mean it I’m just blowing off steam and trying to process this.”
Honestly I was hesitant to include this raw moment but I probably would have reacted the same as he did. I wasn’t mad at him or scared that he shared it. I was so grateful that he felt he could share it and that he could express himself so he can try to make sense of this all.
We cranked up the car and started the drive back to Tallahassee. As we traveled down the interstate, the questions that I couldn’t form words to ask began racing in my mind. David also started asking questions. I grabbed a pen and paper that I had taken with me to write down what the doctor shared and began jotting down the questions coming to our minds.
Would he lose his taste buds?
Would he lose use of his left arm?
Will he be able to eat again?
Is there any visible scarring on the face, neck and arm?
There were more questions as well. I also had a comment in there about how I felt the entire experience was impersonal and while this may be an everyday occurrence to them, this is new to us and a little more explanation would have been helpful.
The next morning after arriving home, I placed a call in to the clinic manager to begin to get answers. I asked her if it would be better to send an email with questions or just ask on the phone. She said email would be best that way she can get with the doctor on any questions she couldn’t answer.
About two days after submitting my questions, I received an answer from one of the resident doctors. He answered all my questions and replied to the comment I made.
“The appearance of not caring. First, let me assure you that we do care. I think you’ll agree with me once you know us better. We do not always seem like it. Here’s the thing: Everyone who cares for him has different jobs to do to get him better. We really are kind of impersonal, in the sense that our main concern with Mr. Robertson, or any patient, is curing his cancer if we can. Only after that are we concerned with his personality, faith, family, worries for the future, etc. Many of those things are much more important than what we do, but if we get too focused on them, we’re doing the wrong job in this whole big project. Mr. Robertson is our job. David is yours.”
I had mixed feelings on his response. Yes I do want a team that this is second nature but does the human, compassionate element have to be removed? If the doctors themselves have to detach themselves at least have someone that isn’t detached follow up.
Now that we were home, the next step was for Dave to have a CT scan. This is to determine if the cancer has traveled, the exact location of the tumor and also to see the state of the lymph nodes. Once the results were back, we will then schedule a surgery date.
In the meantime, it was time to notify family and friends of what was going on. Up to this point we only let a few people know mainly because we knew there would be questions and we had no answers prior to this meeting. There are still questions we probably couldn’t answer but we couldn’t keep everyone in the dark any more.
I have more to share but again this is becoming another long post. Looks like we’ll have a Part III. So far this has been an interesting journey and so much goodness has and is happening. We are resting in God’s unforced rhythms of grace through this process. It is counterintuitive to what our normal human logic tells us but there is such a peace abiding in his love. Thanks for being on this journey with us.