It started in London, but I was unaware. It became obvious in Paris, and it was impossible to avoid. I love to walk, but Julie has always been the athlete in the family. If fact, she requested and got a Peloton for her last birthday.
We were walking the streets of Paris, and she was lagging behind me. Often, she would signal me to stop as she needed a break. Naturally, I inquired why. Julie was experiencing sciatic-like pain. However, if she rested for a bit, it would subside. I had had sciatica in the past. It is miserable but temporary. I didn’t think much about it. Despite her physical limitations, we had a fantastic trip. Soon it was time to return to Naperville.
Back home and I gave Julie some standard doctor recommendations. She found some exercises on YouTube and tried to do them, but they seemed to make her symptoms worse. It was clear that her sciatic pain wasn’t going away.
At that time, our daughter, Grace, was applying to PA school and was having great success. She was accepted to and considered attending a prestigious school in Washington, D.C., and wanted to visit the campus and the surroundings. Julie was born in D.C. (her father was in the CIA at the time) and went to tag along; however, her sciatica was worsening, and she wasn’t sure she could do all the walking.
She set up an appointment with an ortho doc, who did a cursory exam and prescribed a course of oral steroids. With pills in her purse, she went on the trip. Unfortunately, they did little to help her ever-worsening symptoms.
Julie and I felt that her symptoms were no longer consistent with typical sciatica, and she pressed the doctor for an MRI. However, he insisted that she complete a course of physical therapy first, which she did in December. Her symptoms only worsened. She returned to the doctor and once again asked for an MRI. This time he agreed and ordered an MRI without contrast.
I had wanted to go the RTR (Rubber Tramp Rendevous) in Arizona for years, and I had tried to convince everyone from Julie, to Nancy and Mike, and even my friend, Tom, to accompany me. All to no avail. It was clear that if I ever were going to do it, I would have to do it solo. I loaded Violet the campervan, plugged in the coordinates for Quartzite, Arizona, and started the long journey.
I wrote about that experience in a previous post. I absolutely loved being among fellow van dwellers, many of whom are on the oddball side, but in the best way possible. If you have read my previous post, you know I’m also an oddball. Oddballs don’t fit into any category; they are a category of exclusion. I ignored my shyness and met all sorts of folks on my adventure. The RTR attracts individuals without a lot of resources. However, they are amazingly clever and make the most of what they have. Everyone that I met was incredibly nice. The RTR isn’t about competition; it is about cooperation. I loved camping in the desert and meeting these folks.
The RTR runs for about a week. I was planning on staying for six days of the meet-up. However, around day four, I got a text from Julie. “Can you call me?” I did.
Julie wanted to read me the results of her MRI. There were quite a few anomalies, but most were minor—bulged discs and a small descending aneurysm. I translated my medical knowledge into non-medical lingo as she read them off. Then, she read the last impression. “A large solid mass in the right pelvic region in proximity of the L5 nerve root.” “What?” I said. Can you read that back to me again?” She did. “Take a screenshot and send it to me.” She did. We discussed the implication of this finding, and our conversation ended with me saying, “I’m leaving for home.” I drove back to Arizona to Naperville in two days.
Oddly, the ortho doc never called us with the findings. We eventually called him. By then, we were both on high alert. Being a doctor for decades, I know how the system works, what buzzwords to use, and how to get past the red tape. The ortho doctor never had a follow-up visit; he just left a message that Julie needed to see a gynecologist. I wasn’t impressed.
She was able to make an appointment with a gynecologist fairly rapidly and reported that the doctor was kind. He looked at the MRI and advised that Julie see a gyne oncologist. Julie had to go to our group’s website, make random phone calls, and plead her case to be seen sooner rather than later. It was all very stressful for her and for me too. I think we should have contacted our PCP to assist us, but no one suggested that, and our mutual state of mind was in crisis mode, not logical thinking mode.
The gyne/onc appointment was three weeks out, and I suggested that Julie call to see if they could order any additional tests in the interim, as this could save time in a process that already seemed to be taking too long. She did, and an MRI with contrast was ordered. The results came back, and they weren’t good. This wasn’t a gynecological finding; it clearly involved the important L5 nerve root, which offers sensory and motor activity to much of the leg. Once again, we didn’t hear from the doctor, and we wound up contacting him. In fairness, it is possible that he would have called on his own if we had given him enough time.
I already knew the answer, but he confirmed that Julie needed to see a neurosurgeon. Our group did not have a neurosurgeon, and once again, we were left to fend for ourselves. I could coach Julie, but she had to do the legwork. She was working full-time, and only she knew her schedule and symptoms. Hours on the computer, endless phone calls. This was one of the most stressful times as we didn’t have the familiarity of our medical group; Julie was calling phone numbers with the hope that someone could see her quickly. It was really terrible. By then, it was clear that this was a tumor, and there was a strong likelihood that it was cancerous based on its size and strange location. Beyond that, I could glean no further information from the limited data available. We felt like we were blowing in the wind. Yes, I’m a physician, and Julie is a psychologist. We understand the medical system, but we were a family in crisis, not clinicians. We didn’t have a logical separation between treatment needs and personal boundaries.
Through her persistence, she set up two appointments with neurosurgeons. One doctor was at our local Edward Hospital, and the other was downtown at my alma mater, Northwestern. She sent them both a copy of the MRI with contrast, and both places quickly shifted her to different neurosurgeons based on the unusual qualities of those findings. We felt a sense of relief when she had finally secured the appointments.
We first met with the Edward neurosurgeon. He was incredibly nice and had recently relocated from Northwestern to build the neurosurgery program at Edward. He informed us that the tumor was extremely rare and that surgery would be incredibly complex. He had the expertise to do the surgery, but his team at Edward was still being developed and was not yet ready for such a difficult operation. He knew our Northwestern doctor and thought highly of him. He also suggested the head of the department at Northwestern; both doctors were experts in tumors of the spine. He would call them with his impression. Now more waiting, but we had a sense that there was communication and a plan of some sort was developing. We were relieved.
I honestly don’t remember how long we waited for the Northwestern appointment; I’m guessing weeks. I’m not a big fan of driving downtown; I’m a bit phobic about it. However, it had to be done, and I was going to do it. By then, Julie was having escalating symptoms, and it was becoming increasingly difficult for her to do the most basic things like standing or walking a short distance. She was incapable of driving all the way downtown, so I had to figure out a way to do it.
For me, knowledge is power, and I spent an afternoon studying maps, looking at satellite images, and plotting various routes using Google Map’s ability to predict traffic patterns based on the time of day. I also have a thing about being late, as I think that it is both selfish and rude to think that my time is more important than someone else’s. Julie gets this about me, so she was willing to leave generously early for the appointment. We set out for our appointment and got about halfway there when the doctor called to say that he had been exposed to COVID and had to reschedule the appointment. Gasp! More delays.
Finally, we drove downtown. I concentrated on the road, breathing, and I tried not to grind my teeth. Yes, driving downtown is not easy for me, but everything in life doesn’t have to be easy. Recognizing a weakness and then figuring out a solution is more important. Knowledge of the route and ample transit time was what I came up with. Hardly a perfect solution, but good enough. We made it to Northwestern.
The neurosurgeon there was also incredibly nice and spent a lot of time with us. Like the Edward Hospital doctor, he informed us that surgical removal of the tumor would be extremely complicated and difficult. It would involve multiple teams from various disciplines. It would be a big deal. Northwestern operates on a team model, where cases are presented to a committee of doctors from various disciplines. He would discuss the case at the next appropriate tumor board and inform us of their recommendations. More waiting. He also wanted us to see a neuro-oncologist at NMH, another doctor, but luckily the appointment wasn’t weeks away.
That doctor was also really caring. He said Julie needed a biopsy, which would be difficult to obtain due to the tumor’s location. We voiced our concern that everything has taken so long that it was now months since we started our journey. The doctor picked up the phone and called in a favor. The biopsy would be the following week.
Another trip to NMH, a biopsy, and then waiting for results. The results were unusual, to say the least. This tumor was a sarcoma, which are rare tumors. However, it was also a rare type of sarcoma. Further, parts of the tumor appeared benign and other parts were cancerous. It was possible that it could respond to novel monoclonal chemotherapy used for blood cancers, and we were sent to a heme-oncologist doctor—more waiting.
That doctor concurred that chemotherapy MIGHT work, but there wasn’t a lot of research data on using that agent with this cancer. This somewhat experimental use would require additional permission from our insurance company. He would work on getting that permission and bringing the case to another tumor board at the hospital. More waiting
He did get approval for the novel chemotherapy, but we found out that its impact, if any, would take 6 months or more to work. The chairman of the Department of Neurosurgery was at that tumor board meeting and wanted to meet with us. He thought the tumor should be removed, and peeling it from the nerve may be possible. Otherwise, they would have to remove not only L5 but the L4-S3 nerve roots with devastating consequences.
During these months, Julie’s pain did not remain static. It was significantly worsening every few days. Work was becoming impossible. She couldn’t stand for more than a minute or two; she couldn’t sit in hard chairs, then any chair. Sleeping became difficult, with her waking up in pain every few hours. She had trouble walking very short distances. She was seeing a pain doctor and was up to the maximum dose of a nerve pain medication, and she was also taking the maximum dose of an NSAID as well as a powerful opiate at bedtime. All of this wasn’t touching her pain, but it was making her mentally cloudy-a no-go for someone who makes their living with their brain. A steroid epidural was recommended, with the hope that it would provide a few months of relief. It helped for less than a week.
We met with neurosurgeon #3, the chairman of the department. He said he would work with neurosurgeon #2 and the chief resident of neurosurgery in the surgery. In addition, the head of plastic surgery would be there as additional reconstruction work needed to be done. There would also be a general surgery team present, plus a variety of anesthesiologists. They would book the operating suite for 8 hours, and the minimum time in the hospital would be 5 days. When you have no options, the best is the only one given. We took it.
We also needed to get a PET scan, a test that looks at metabolic activity and is very sensitive at locating additional tumors. This was another struggle, but this time we had the foresight of contacting our PCP and asking him for help. Although he was far removed from the case by that point, he got us an appointment. Thank you, Dr. Lee-you are a peach. However, in the end, we had to go back to Northwestern for the PET scan, but it felt good that we had a doctor who was not only concerned but also willing to extend himself when he technically didn’t have to.
Now all we had to do was to schedule the operation. That meant scheduling the head of neurosurgery, his second in command, the chief resident of neurosurgery, the head of plastics, a general surgeon, and several anesthesiologists for the same 8-hour block. That should be easy-not.
Finally, all was scheduled for June 8th. Remember that our first doctor’s appointment was in early November.
For some reason, I thought I should go to the surgery solo. I didn’t want to disturb the kids’ lives. Crazy, I know-and they thought likewise. They would hear none of it; they were all going.
In the wee hours on January 8th, we assembled. In my compulsive way, I told the kids to bring things to occupy themselves. This was a silly thing to do as they are all competent people who had already planned for the day. I believe that I also reminded them to bring their phone chargers… as if they would forget such things.
Each of us brought stuff, from schoolwork to novels. The hours ticked on with an automatic text message every two hours to say, “The operating is proceeding as expected.”
First, I got a call from Dr. Wolinsky (head of neurosurgery) saying that his portion of the operation was complete. He was able to peel off the tumor, which was the size of a peach. However, it was unclear how L5 would respond. Hours later, I got a call from the head of plastics saying that his portion of the operation had been completed and that they were closing Julie up. The operation took 7 hours, and she was in recovery for over 3 hours. Julie lost so much blood that her hemoglobin dropped to 7, with the normal range for women being between 12-16. The 7 was after getting blood transfusions.
Julie spent 4 days in the ICU, then a number of days on a med/surg floor before being transferred to Marianjoy Rehab Hospital. Her total time in the hospital was nearly a month. Naturally, we visited her every day. She has worked hard, but at present, she has very limited use of her right leg. She is learning ways to ambulate with a walker and is using assistive devices now that she is home. We are hopeful that L5 might wake up or at least return in some partial form, but that is uncertain.
Although she still has pain, it seems to be more from the recruitment of new muscles. The horrific debilitating pain in her lower back and leg seems absent. Her numbness continues. Every day I see improvement in her ability to adapt. I encourage this but don’t want to push her too far. She is working hard.
Many have told us how surprised they were to see the way that we coped with the diagnosis. Their observations have truth.
However, the journey has been horrific, and some of that could have been avoided. Yes, the very long wait (8 months between first contact and surgery) was terrible as Julie continued to suffer. However, we used that time to learn more about her diagnosis and how to prepare for the future. The biggest trauma was feeling like we had to do so much of the work on our own. We are medical professionals, but that only goes so far. We were in crisis and just trying to function. I believe that we should have contacted our PCP earlier on. He is a great guy, but no one told us to do this; the specialist doctors just gave random commands like, “You need to see a gynecologist,” or “You should find a neurosurgeon, but we don’t have one on staff.” Often we never even heard from the doctors; we reviewed the test results and called them. We would then get a message back or possibly a call from one of their underlings. No one said, “Come in and let’s talk about it,” or “Our office will arrange for you to see Dr. … ASAP.” We were just left to blow in the wind as we were dealing with terrifying news. For me, the worst time was when we were told to find a neurosurgeon but given no additional information. Where should we go? What kinds of neurosurgeons were we looking for? What should we tell them? How quickly did we have to see them? None of this information was provided. It was by the grace of God that Julie was not only able to make appointments but that we got the doctors that we did.
The first neurosurgeon (Dr. Jones) couldn’t do the operation but gave us information and called Northwestern to inform the doctors there. The second neurosurgeon (Dr. Swong) was nice, respectful, and encouraging, as was the third neurosurgeon (Dr. Wolinsky). In fact, all of the NMH docs were wonderful, except the pain doc. He was OK but treated Julie like she was a drug addict because his methods weren’t working. Even so, he did his job and wasn’t too bad. However, it does bug me when a doctor blames a patient because he can’t remedy their problem.
There is likely more to come, radiation, possible proton therapy, and who knows what else. We have been cared for since we plugged into the Northwestern system. There was a plan, although it changed from week to week. However, we knew it was changing because the team was getting more information and opinions and thinking about more options. You can’t fault them for that.
We also had excellent care at both hospitals. I was proud that I went to Northwestern for med school and my residency. Marianjoy was… well, a joy.
You may ask why our family will stay with the extremely large medical group that we currently use. Honestly, it is because of our PCP, Dr. John Lee. He is smart, respectful, compassionate, responds to inquiries, and is a good guy. I like to think of him as an Asian Dr. Welby. Most of our medical needs are typical, and Julie is already plugged into the Northwestern system for her cancer treatment. However, she will continue with Dr. Lee for her regular medical stuff.
We have a long way to go—Julie as an individual and our family. But we are on our way. In the next post, I’ll talk a bit about our emotional journey. In that post, I’ll emphasize my feelings. I don’t think they are any more important than Julie’s or the kids’. Rather, I know what is going on with me more than I know what is going on with the others.