Shortly after I was given the news of the grapefruit in my chest cavity, I was admitted to the hospital and ended up staying there for about nine days, including Thanksgiving, through my diagnosis and first infusion chemotherapy treatment. Being inpatient throughout the entire process of my biopsy, diagnosis, and first treatment is quite rare. Most patients have to wait a week or two for a biopsy, another week minimum for their results, and usually another week or so for their first treatment.
Once he was assigned to my case, my oncologist calculated that my tumor grew to about 13cm in, likely, 4-6 weeks. Conservatively, it was growing at a rate of about 1/3 of a cm per day. Given that, and its location over my lung and heart, there was a possibility that it could grow so quickly that it might damage my lung and/or occlude my trachea/esophagus. My oncologist didn’t feel comfortable letting me leave the hospital knowing that was a possibility. Also, my tumor was growing so quickly that he didn’t think I could afford to wait another week or two before receiving my first treatment. Staying in the hospital meant that they could move the process along at a much faster rate.
Most of my stay was a blur of getting blood drawn, vitals taken, meeting with doctors of all types, eating mediocre food and watching a lot of TV. But, there were some notable events in terms of my diagnosis and treatment.
The first morning round: Years ago, I purposefully chose a primary care physician who was based in a university hospital. (In the future, I’m planning to write about how I think this has contributed to the successful treatment I’ve received thus far.)
As I’ve mentioned already, there are multiple levels of physicians in a university hospital, and once I was admitted, I had to become (very quickly) used to the fact that, each morning, a small army of doctors would enter my room for rounds to check in on how I was feeling, listen to my heart and lungs (or really, lung in the singular since my left lung was not inflating by that point), and let me know what the plan was for the day in terms of tests, procedures, etc.
These visits were kind of odd as typically a resident who was assigned specifically to my case would be the one to do all of the talking while the interns, med students, and other residents would stand around my bed, literally looking down on me. I never had any idea who to look at when I was answering questions since only one was doing the talking but they were all taking notes and nodding along. I felt like a bad dinner party host focusing all my attention on one guest, but eventually I got used to it. The attending who was supervising the team would often stand in the back of the group, and although I had trouble identifying him/her at first, it was good to know they were there making sure this little army didn’t go AWOL or run amok on my health.
I remember the first morning round quite clearly. The resident tentatively knocked on my door and the team entered my room. Introductions were had all around, as if I’d remember anything but the first name or two. I could tell by their body language and initial introductions that they were unsure as to how I was handling the information that a large tumor had grown in my chest over a period of a few weeks, and we didn’t yet know what it was. This was confirmed when the resident handling my case said, “We know you’re probably going to need some time to process what’s going on with your health as it must be very shocking”, with a look of genuine sympathy and concern on his face.
When I received the news the night before, I did have a bit of a breakdown when I called my husband. Mostly, I was scared for him. I knew I could handle whatever was about to come my way, but I also knew that a cancer diagnosis meant that I might die. What scared me was not that prospect, but thinking about what would happen to Jeff if I wasn’t here. My husband is more than capable of taking care of himself, and I rationally know this. But, we’ve been together for over 13 years and I imagined all the things that I do in our relationship that he would have to handle on his own. That made me really nervous, but once I heard his voice on the phone and knew he’d be with me in the hospital soon enough, I calmed down.
After I hung up the phone with him, I took about five minutes to pull myself together. I then had the clarity of thought required to realize that we needed to figure what exactly “it” was and determine a treatment plan. I made the resolution then and there that I was not going to be emotional about this situation, and more importantly, I was not going to allow myself to think that I could die. I figured that I’m young, I’m smart, and I’m tough. Whatever “it” was, it was not going take me down.
So, when the resident said I must feel like I needed some time to process things, I took control of the situation. I did not want to be handled with kid gloves and I didn’t want to prolong the process. I said, “Doctor, I’m done processing what’s going on. I took my time to do that last night in the ER. Now, I just want us all to be productive and figure out what this is so that you can develop a treatment plan and we can move forward. I promise you that I will be a stellar patient and I’ll do everything you ask, so long as I feel like we’re moving towards nailing down a diagnosis and treatment”.
The mood in the room instantly changed from one of empathy to one of understanding that i wasn’t messing around. The resident said, “Okay, then. That’s what I like to hear. Let’s talk about our plans for a biopsy so we can move forward. We need that before we can do anything else.”
While I sincerely appreciated their concern for my emotional well being, I feel strongly that by taking control of the tone of their approach to me, I kept everyone moving towards getting me diagnosed and treated as soon as possible. I didn’t need touchy feely…I needed action. That’s what would make me feel better emotionally – to know what was going on and how the team was going to handle my care. Once I had answers, I knew I would be okay.
The biopsy: The resident explained that they wanted to do my biopsy via a bronchioendoscope, which meant they would send a tube with small camera with a biopsy needle of sorts down my trachea to obtain a sample from the tumor and inspect the tumor visually. Unfortunately, this was considered a surgical procedure and they wouldn’t be able to get me scheduled for another couple of days, especially due to the Thanksgiving holiday.
I asked if there were any other options that would get the biopsy done sooner. In fact, they could do an ultrasound guided biopsy where a biopsy needle would be guided into the tumor through my chest cavity using the visual guidance of an ultrasound. This could be done that day or the next, depending on the schedule, but they warned me that this type of procedure was less accurate in terms of obtaining enough viable tissue from the tumor in order for the pathology lab to make a diagnosis. If they didn’t get enough tissue, they would have to reschedule a bronchioendoscopy and that could set us back another few days. On the other hand, that procedure would almost surely obtain enough tissue on the first shot.
I was determined to get things going as soon as possible, so I said I was willing to have the ultrasound guided biopsy, even though there was a greater chance of not obtaining enough tissue. I figured the odds were still in my favor and with the holiday coming up, I wanted the pathology lab to get my samples as soon as possible.
Sure enough, they were able to get me in that day for the procedure. I was given a mild sedative and rolled into a room with the ultrasound equipment. The resident and attending came in and introduced themselves. While they set everything up, they asked what I did for a living and I told them I was a biology lab instructor at a college and my focus was anatomy and physiology. (This generally excites doctors as I think they feel like we speak the same language.) The resident who was going to do the biopsy was standing on my left and the ultrasound screen was on a cart to my right. They numbed up my chest with lidocaine and asked me to turn my head to the right. They mentioned that I might want to close my eyes so i couldn’t see the screen.
“Are you kidding?! I definitely want to watch this”, I said. The anatomy geek in me thought seeing an ultrasound of my chest cavity was amazingly cool. The neurotic side of me thought that if the resident didn’t grab the tumor, I would want to know exactly what happened and what better way to do that then seeing the screen myself?
The resident announced that she would begin the procedure. I could feel pressure being applied to the site of needle insertion but I didn’t feel any pain. A moment or two after she started, I saw the needle on the screen aimed at a solid looking mass that appeared as she moved the ultrasound equipment over my chest cavity. It occurred to me that the mass was THE mass. It was the tumor, right there in front of my eyes.
“Is that it?” I asked the attending. “Yes, that’s the tumor right there”, he replied. I paused for a moment.
“That is absolutely amazing and cool…I just wish it wasn’t coming out of me”, I replied.
I saw the needle go into the mass and the resident said she obtained sample 1 and I saw the needle retract out of my chest. She placed the sample in a jar being held by the attending. He asked me if I wanted to see it – he told me few people ever did. Of course, I wanted to see it.
It was white, very long and thin, and floating around in some sort of fluid, maybe ethanol, in a small jar. I started at it for a second knowing that sample could be what tells all us what was growing in my chest cavity. Meanwhile, the resident went in again and obtained a second sample. The attending showed it to me, they bandaged me up and told me I might feel like I got punched in the chest the day. (I definitely did…I felt like I got walloped but good.) I was rolled out of the room into recovery and eventually brought back to my room.
The port placement procedure: The wait was on for the pathology lab to get a diagnosis. It took about two days before they were able to say that it was definitely a type of lymphoma, and a full week to obtain the final specific diagnosis that would determine my course of treatment.
The wait between day 2 and 7 was frustrating – not because I was bored or scared but just because I wanted something to happen, anything to happen to move us forward. After the Thanksgiving holiday and the weekend, my oncology team was able to schedule me for my port placement surgery.
Rather that having to place an IV in my veins each time I went in for treatment, my oncologist wanted to have a portacath, or port, placed in my chest on the right side. Here’s what one looks like:
It’s placed under the skin and the tubing connecting to that peg off of the metal disk is fed into one of the jugular veins that connects to the right atrium of the heart. When you go in for treatment, the nurse will place a needle in the plastic septum in the circle as you see above and then your meds are given to you that way. Having one of these ports is convenient as you don’t need to be poked for an IV every time you go for treatment. Plus, you can shower/bathe easily as all of this is under the skin completely.
For this procedure, I was not placed under general anesthesia, but I was heavily sedated. Once in the surgery room, I was wrapped in sterile blankets from head to toe with only the right side of my chest exposed. I asked the nurses to prop me up a bit as they initially had me laying flat but the tumor was making it impossible for me to lay that way without coughing. The last thing I wanted was to have a coughing fit while a surgeon was making incisions near my jugular vein.
Eventually, the surgeon came into the room but I couldn’t see him because my head was wrapped up tightly in sterile blankets and turned to the left so my head wouldn’t get in his way. Since there was a huge row of monitors to my left, he couldn’t come around to that side.
He just said, “Jocelyne, I’m Dr. M and I’m going to be performing your port placement procedure. You’re going to feel a little pressure now as I’m going to begin the incision”. The nurse asked if she could give me another dose of sedative, which he agreed to, and although I felt him beginning to make the incisions needed to place the port, I quickly fell asleep.
Next thing I knew, I was being woken up by the technicians and nursing staff while I was rolled off to the recovery room and the next step in my treatment was complete.
Getting the final diagnosis: The port was placed on a Wednesday, eight days after I was admitted. We were still waiting for the final diagnosis when I returned from surgery. Around noon that day, it came in with my oncology team.
I was officially diagnosed with diffuse large B cell lymphoma, a form of non-Hodgkin’s lymphoma (NHL). Apparently, the pathologists were going back and forth between two types – diffuse large B cell and a much rarer form called Burkitt’s lymphoma. My tumor growth had really outpaced traditional markers in the blood work for diffuse large B cell but they finally came to that conclusion, which is what my oncologist suspected all along. With a diagnosis with diffuse large B cell, they typically would do a bone marrow biopsy and possibly a spinal tap to determine if the cancer had spread to the bone marrow or cerebral spinal fluid, but since an abdominal scan revealed no signs of tumors, my cancer was localized to the chest cavity (specifically the mediastinum), and the blood work showed no signs of progression, it was determined that I was in an early stage with a really aggressive tumor.
My oncologist explained that having an aggressive tumor was actually beneficial for treatment (counter-intuitive, no?). Chemotherapy is designed to destroy fast growing cells and prevent them from growing in the future. To do this, it attacks cells during their process of division. As it turns out, the more often cells divide/multiply, the more opportunities the chemo would have to attack the cells. While I would prefer to have nothing in my chest cavity except what should be there, it was good to know that this tumor’s aggression would work to my benefit.
With that, he explained that I would start my first round of chemotherapy in a few hours and they would do it in-patient so they could monitor me closely throughout the process. If I tolerated it well, they would schedule me for the remainder of my treatments in their outpatient clinic and I could probably go home the next day and that’s exactly what happened.