Today was my first official day as a cancer patient; that is, today is the first day I spent talking to a zillion different people trying to figure out what the hell to do next.
And let me just say that it mostly sucked. I started the day trying to get an appointment with a hematologist/oncologist and learned that they wouldn’t get me in until we had the final results from the needle biopsy I had on Thursday. I still wanted to get the ball rolling, so I sent over the records I already had, which included bloodwork from a few weeks ago and the report from my CT scan. For the first time, I looked in detail at the lab report from my bloodwork and realized that my primary care doc had not ordered a white blood cell differential, which would be the primary way she would have been able to tell whether there were any signs of lymphoma in my blood (a differential is a count of different types of white blood cells—often with lymphoma, these counts will be abnormal). She had told me during the appointment that she was going to order a differential and when she sent me the results, she sent a cover letter saying there were no signs of lymphoma, so I just assumed she’d done the differential. But the report itself explicitly says, “Complete Blood Count; No Differential.” So for the several days since the biopsy, I’d been feeling hopeful that the lymphoma was in a very early stage since it was not yet affecting my WBC counts. But now I realize that we actually know nothing about those counts and so we have no idea if my bloodwork is favorable or not.
Then came a call from the ENT in DC who had ordered the needle biopsy telling me that the needle biopsy was “not diagnostic,” meaning that they didn’t get enough tissue to confirm the diagnosis. Everything I’d read already told me that needle biopsies are rarely diagnostic for lymphoma and that a surgical biopsy would be required anyway to determine the “architecture” of the lymphoma if one is present, so I don’t really understand why the ENT didn’t just order a surgical biopsy to start with. Since the final pathology report was not diagnostic, I now had to schedule a surgical biopsy in order to confirm the diagnosis (which had to be done before I could meet with an oncologist). I felt strongly about doing this here at UNC rather than back home in DC (fewer problems transferring records), which meant that I had to find an ENT and hope to be able to get in quickly. Luckily, the ENT department at UNC has a special head and neck oncology section, and the patient coordinator there was incredibly nice and helpful. I told her I wasn’t sure where to start with what I needed to do and she said I was talking to the right person. She checked the schedule and told me that I was really lucky because the chief actually had a cancellation on Wednesday—otherwise, I’d have been waiting 10 days to 2 weeks before I could even get the damn biopsy done. She told me she needed me to get her the final pathology report and slides, as well as my doctors’ clinic notes, as soon as possible. So I got on the phone to DC and started calling all the places where I thought I could get these records and ended up making four different phone calls until finally someone told me that I just needed to call the medical records department. If only the FIRST person had told me this, it would have made this process so much easier. When I called medical records, she first told me that I’d have to fill out an authorization and wait 10-14 business days. I am not usually rude to any person helping me on the phone or in person, but I was so done from the rest of the morning that I cut her off and said, “That’s not going to work. I’m having a biopsy done on Wednesday and the doctor needs these records urgently.” Then she told me that the doctor could request the records himself on an urgent basis. Again, a totally easy solution that it would have been nice if someone had explained to me four phone calls ago. Gah.
I left the patient coordinator back at UNC a voice mail full of gabbledy-gook trying to explain what she needed to do and giving her the relevant phone numbers. She was so nice when she called back, telling me not to worry, that I was doing a great job handling all of this. She said she’d taken care of getting everything the surgeon would need and told me to call her anytime I had questions. I really think that folks who work in oncology departments are just a different breed—thank goodness, because this entire process is overwhelming and terrifying, especially right at the beginning, and it makes a huge difference to hear someone tell you that you are doing just fine.
So just when I was hoping that we’d have some answers to our gazillion questions in a few days, it looks more likely that it will be at least a week before we know much more about the final diagnosis and the subtype of Hodgkin’s, let alone getting other tests done for staging.
It was a rough and tiring day. Once I know what the hell is going on, once we have a plan of attack, I will feel so much better about all of this, because then I can start making plans. Everything is on hold right now, and I really don’t have a lot of time for things to be on hold. Within the next four weeks, I have to say goodbye to all of our friends in DC, move my family out of our house, finish training for and complete a triathlon, meet with our architect to begin working on the initial plans for renovating our new house, and grade my students’ final papers. And now, on top of all that, I have to manage this damn cancer and try to squeeze in as much snuggling and nursing with Jackson as I can before I start treatment, when I’ll be spending half- and maybe full days away from him and will probably not feel so hot even when I am at home.
And one of the things that makes me saddest of all is this: I already had too many things going on as it was to spend as much time as I needed with my sweet girl. I was already feeling pulled away from her more than I wanted to be. And now, there is this whole new giant thing sucking my time, energy, and attention. I miss her so much every moment, but now I feel like I miss her even more, like she is as far away as she has ever been because I am so distracted. I am so sad that this blog, what I’ve called a chronicle of my learning to live again after Hudson’s death, is now also a chronicle of my journey through cancer.
It was a rough first day as a cancer patient. But fortunately, I’m way more than just a cancer patient. I just have to figure out how to manage this thing so that “cancer patient” stays way down at the bottom of the list of things that I am. Again, I think this will get a lot easier once we have a plan.
For now, I’ll think about this picture. More than half of my Team in Training teammates raced in the Lavaman Triathlon in Hawaii yesterday. They posted this picture that they took right before the start. It reminded me not only of how incredibly well-supported I am going to be through this fight, but also of why I decided to do Team in Training myself. Because every person out there racing has the name of someone like me on her wrist or on her shirt or in her heart. TNT is a battle cry against blood cancer. And when you’ve just been diagnosed with one, battle cries are really what you need to hear.
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