Living my life with Lymphoma
I’m not complaining about needing multiple tests. I’m in awe of the science behind the simplest blood test and the fact that diagnostics are available to me as my providers deem them necessary. But they seem endless when you have so many, find out about them in piece meal, have to wait for appointments, and then for results.
“Oh…has anyone told you that you need to have a bone marrow biopsy?” No.
“Have you had your MUGA scan yet?” My what??
“We’ve scheduled you for a PET scan for next week.”
“You need to see your GI Specialist.” Oh boy. Here comes a colonoscopy and an endoscopy. I didn’t need the colonoscopy, but had to schedule and wait for the endoscopy, and then wait for the results.
“Before you leave, we need to do a chest x-ray.”
“You need to have a simple needle biopsy. You appointment is in two weeks.” Ten days after the biopsy: “The needle biopsy was inconclusive.”
“You need to see a surgeon to get a lymph node from your abdomen for another biopsy. Your appointment is in a week and a half.” “You have to see your Primary Care Physician for surgical clearance first.” After the surgery consult, a scheduler calls and tries to schedule surgery for three weeks ahead. Very nicely, and I’m sure with a hint of vocal desperation, she understood that I needed an appointment long before that. I got it down to 10 days. I have my first encounter with anesthesia, intubation, and catheterization on my birthday, wait 10 more days for the results, and learn that although this process narrowed the diagnosis down a bit, it was still not conclusive enough to begin treatment. They decide to send my slides to Boston where it took another ten days to get results. Still inconclusive. I learned that there are 60 different kinds of Lymphoma, and knowing the exact sub-type is of utmost importance.
“You need to see a thoracic surgeon to get a node out of your chest for another biopsy. Your appointment’s in 2 weeks.” I don’t think so. I called the surgeon’s office back with that desperate tone that was becoming all too familiar to me, and begged for a sooner appointment. Eight days later, I was in his office. “Your surgery is scheduled for a week from today.” I then asked the scheduler if I could lie down on her floor because I was so sick. They rescheduled it for three days later. “You need to see your Primary Care Physician for medical clearance first.”
“You should get a second opinion at Dana Farber in Boston.” Several phone calls to Dana Farber and what seemed like a tedious process to get prior authorization from my insurance company for this visit, and we were on our way. A total of seven hours on the road while not feeling good is quite a challenge, and staying in Boston was not an option. I needed to be in my own home and own bed for comfort, and making the round trip was the lesser of the two evils. The visit itself was valuable, but I’d like to forget all the steps that it took to get there.
“You have to go to a Chemo Class before starting treatment. You’re scheduled for next Monday.” That’s another whole week away I said with a shaky voice, trying to control the drama that was about to be unleashed from me. “OK, how about this Wednesday? And you can start treatment the next day.” My weary drama turned in to grateful tears. I was so sick of feeling sick. Let’s get the show on the road.
“You need blood work.” “You need blood work.” “You need blood work.”
As I mentioned above, I’m not complaining. There’s no room, energy, or validity in complaining. I’m just recapping how several months went by while I waited and worried, and got sicker and sicker. I’m thankful for every test I’ve had, and the professionalism and compassion I have experienced along the way. I’m thankful for modern medicine, and captivated by the knowledge and selflessness of each person who was behind every service I’ve received.
I really am.
I’m having a good day today. I was able to write this post.