This is a huge week. Dave is having his surgery on Thursday, July 18th. I thought I would use this post to catch you up to date so you know what has happened up to this point, how Dave is doing and the anticipated prognosis from the doctors.
Shands ordered the CT scan after our visit on June 5th. I hadn’t heard from them by that Friday, June 7th so on Monday, June 10th I called the radiologist office to get our appointment. The lady who answered the phone said I was her first call for the day and she was about to call me. We were able to get a scan scheduled that same day. The reason for my urgency was that the medical team at Shands only reviews scans on Tuesdays and I was trying to have the scan complete and overnighted to them so they could review it that Tuesday.
Dave had the scan and they were able to send it right away so Shands would have it the next morning. I called the clinic manager the next day to confirm and she said they did receive it and the doctor would review it but as far as the team reviewing it we would have to wait until the following Tuesday! Ugh! I was so hoping to get this reviewed so we could get on the plan to getting this thing out of my husband’s mouth.
My frustration with Shands up to this point continued to grow coupled with the fact we really didn’t want to have to travel to have this surgery. We would rather be home. After praying and consulting my mentor, I had a peace to schedule an appointment with a local doctor to obtain a second opinion and also to establish having a local doctor so we had a sort of touchstone. I visited the websites of several local cancer centers and found one doctor who I was drawn to after reading his reviews. The testimonials on his site spoke to me because they talked about treating the whole person not just the cancer, which Shands made abundantly clear they were treating the cancer (AKA Mr. Robertson) and David was my job.
We made the appointment with the doctor on June 19th, the week after Dave’s CT scan and it would be the day after Shands would be reviewing Dave’s scan. In the meantime, it was more waiting. The day finally arrived to have the scans reviewed and we anxiously awaited to know if things were any worse and if the prescribed surgery would still be the same. It was the afternoon of Tuesday and I couldn’t wait any more so I called and spoke with the clinic manager. She said they did review the scans and we were still on track for the same procedures and nothing has changed. It has gone in his lymph nodes but they were removing those anyway so they weren’t concerned at all. What a relief!
The next day we had our appointment with local doctor. The nurse took us back and took David’s vitals. She was a super nice and calming nurse. She shared their office had treated another patient that had the same procedure as what was prescribed to Dave. She let us know she was doing really well. We were then escorted back to a room to await the doctor. After a period of waiting, the doctor enters the room. He was an older gentleman in his late 50s with a warm smile. We later learn after his exam of Dave that he is from Iraq and has lived in the United States since his 30s. He shared about growing up in Iraq and the difficulties that he experienced. It was quite fascinating and eye opening to just how blessed we are to live in a country of freedom.
He shakes our hands and introduces himself and begins to ask Dave questions and then exams him. He also had a copy of the CT scan and had reviewed it. We shared the prescribed surgery and plans to him. He shared with us that oral cancer is one of the most curable cancers there are and that the proposed treatment is what he would recommend and he also said he would recommend Shands as well.
He asked if we had seen a radiologist yet as Dave was going to need radiation and his office only performs chemotherapy. We said he was the first doctor besides Shands that we had spoken with. He said he would refer us to a local radiologist oncologist so we could see him right away. He left the room and Dave and I just sat in amazement at the information he shared and how awesome he was being. I felt like I finally had some help from the medical profession and began to really understand what we were dealing with in terms of Dave’s diagnosis.
The doctor returned to the room and he said the radiologist’s office would be calling us to schedule an appointment. We continued to visit and ask questions. He was so positive and really took the time to listen. We later found out that his wife was in critical condition and needing a lung transplant and she had been at the Mayo Clinic in Jacksonville for the last several months. He has been driving back and forth every weekend to be with her and coming here during the week to treat patients. I was humbled by his compassion, dedication and care during such a difficult time he was facing personally.
We left the doctor’s office and no sooner do we get in the car and I receive a phone call from the referring doctor. They scheduled an appointment for the very next day. They really wanted to see Dave before he has his surgery so they can see the position of the tumor and better treat him with radiation.
The next day we walked in to the appointment with the new referral doctor. We were called back in to an exam room and the nurse, whose name is Angela, began asking questions and taking Dave’s vitals. She was so amazing and knowledgeable. She really took her time and I loved her soothing and calming voice. She then said the doctor would be with us shortly and left.
Shortly thereafter In walks the doctor. He introduces himself and begins to ask questions and exam Dave. He actually wanted take a scope with a camera attached and insert it in Dave’s nose so he could examine Dave’s throat, mouth and voicebox. At first I thought I would be too grossed out to watch the screen as the camera displayed what it was viewing. I took a chance and it wasn’t that bad and was actually cool to see. He said nothing was in Dave’s throat and the voicebox looked great. More good news!
He had reviewed the CT scan we had provided him and he also agreed with the treatment prescribed by Shands. He also answered our questions and again confirmed oral cancer was one of the most curable cancers. He said it was a slow growing cancer but if it was going to travel, it would go to the lungs so he ordered a CAT scan of Dave’s chest to rule that out.
All in all the visit was amazing. David really like this doctor a lot. He did share that Dave will have to do radiation post surgery and studies have shown that when combined with chemo it greatly reduces the risk of the cancer returning. He explained the radiation process is quick and it is a targeted radiation so they will only be treating the area where the tumor resides. Because it is targeted it is of utmost importance to have the head in the same position for each radiation session so they will be building him a mesh mask that will go over his face and cause his head to stay in position. The actual treatments themselves will last about 5-10 minutes. He will need radiation five days a week for seven weeks. Whoa! One advantage to us moving to Tallahassee and the house we are in is that all these doctors are within two miles of our house. I am so grateful especially given he has to have so many treatments!
The side effects of radiation will be:
- Permanent loss of facial hair on the right side of his face.
- Permanent loss of saliva glands in his mouth so he can’t make spit or moisten his food when chewing.
- Burning on face (like a sunburn) after treatments but will go away after time.
As if the side effects of the surgery weren’t enough now we had additional effects. I honestly didn’t want to focus on that as this is a ways off and right now I just want to get this thing out of Dave’s mouth. The two doctors visit we had were more informative and positive than anything we had experienced up to this point. I was so grateful God led me this way. We felt so much more hopeful than we had since this whole journey started.
We had the CAT scan scheduled for Tuesday, June 25th. The same process as the other scan basically. Up to this point Dave had been experiencing pretty significant pain and we had been getting our pain med prescriptions from Shands, which they were not helpful with at all and it would take days for the clinic manager to call me back. Because of the new laws regarding narcotics, you have to actually pick up the prescription from a doctor’s office, which meant Shands had to call our local oral surgeon who diagnosed Dave originally and we would have to go to their office to obtain the script. Dave had the brilliant idea that since we now had local doctors, why not have them fill the script. Duh! Why didn’t I think of that.
We contacted the radiologist oncologist we had just seen to obtain a script. They actually wanted us to come in because some times infections can cause pain and they wanted to see if Dave indeed had an infection. We went in the day after the CAT scan to have Dave examined and hopefully get the results of his scan. The doc came in and let us know we were all clear and the cancer had not spread to his lungs. Woo hoo! More awesome news. He then examined Dave and found he did in fact have an infection. He prescribed some antibiotic and some pain meds and we went on our way.
During this time we were awaiting Shands to confirm a surgery date. I had been calling and calling and nothing. Waiting for a surgery date was for sure adding stress to us. We felt like we couldn’t make any plans because we didn’t know when we would have the surgery. In my impatience, I finally called Shands again and success! We had a tentative date for the surgery but that we would receive a call from the hospital to confirm. The date would be July 18th, which the time I received the date was three weeks away. I can’t describe the relief Dave and I felt finally having a date. We had something to work towards now. At first I thought it will be here before we know it and we could make it until then.
As I’m typing this update it is July 15th and this has been the longest three weeks of my life. Dave has been in so much pain and to the point of barely eating. There is absolutely nothing we can do to speed things up and all we can do is wait. We are almost there. Only two more days. This truly has been a journey and what I’m learning is to rest in God’s timing and healing. My mind has been racing with thoughts of I should be doing this or I should be doing that but my spirit is at complete peace. It is so counterintuitive to what we are taught as humans and how we operate in crises. I have been communicating with the Lord asking Him is there is anything I should be doing and he keeps telling me to rest in the grace of His healing. I’m leaning in to this as hard as it may seem, my mind doesn’t compute this but the peace I feel in my spirit far outweighs the angst in my mind. A few years ago, I would have had the opposite experience. I would have totally let me head rule and began operating in my own strength.
I was talking with one of my mentors the other day and we were talking about the difference between expectation and anticipation. She was sharing with me that expectation is when you perceive a certain outcome of a circumstance. If that outcome doesn’t happen exactly as you imagined, it can lead to disappointment, frustration, anger or resentment. Anticipation is expecting something for the good of the situation but not in specifics. You are open to whatever outcome knowing that God is a good, good father and only wants the best for His children. It is a place of gratitude no matter the outcome.
Do I have wishful expectations of this entire circumstance? Absolutely! I’m also moving in to a place of anticipation of what God is unfolding through this journey. It truly does feel like a roller coaster ride with the thrill and excitement of the ride and the anxiousness of what is coming down the track but the thrill of the ride is so consuming and overwhelming you don’t have time to fear what is coming.