Staging
Hodgkin’s has four stages, corresponding to how far the disease has spread. Each stage is designated “A” or “B”, depending on whether the patient has symptoms (B) or not (A). I already knew I wasn’t stage I, because Dr. Naruns had found some other swollen lymph nodes in my neck. The first order of business with Dr. Yu was to figure out which of the other stages I was.
Physical exam
2/7/03: Dr. Yu examined me mostly by poking in the areas where the lymph nodes are, which correspond pretty well to where I’m ticklish (at least there are no lymph nodes on the bottoms of the feet). He suspected that I was at stage IIA, and ordered a bone marrow test, CT scan, and PET scan to be sure. Both the bone marrow and CT tests could be done within a week, but the PET scan was going to take longer to schedule because the machines are more rare.
Bone marrow test
2/10/03: I asked whether the bone marrow test would hurt, and Dr. Yu said he’d prescribe something for me to take beforehand to relax me. This is doctor-speak for “It will hurt.” The bone marrow was taken from the back of my pelvis, but not until after they’d injected me with morphine and novocaine in the area. It hurt. I was glad that the doctor thought it was sufficient to take one sample, instead of one from each side. The site remained pretty sore for a few days. Alana was outraged that the doctor didn’t give me a lollipop, so she brought me a big bunch of them the next day.
2/19/03: Got the results: “Negative for Malignancy”. WAHOO!!!!!!
CT scan
2/13/03: I was very concerned about the CT scan, even though Mike repeated that it was no scarier than an X-ray. The night before, I had to drink some barium sulfate (didn’t taste as bad as I thought - like a thick, alcohol-free pina colada), and I drank some more that same day. Mike was right - the scan was a big so-what. I lay down on a bed, and the bed slid back and forth inside a tube with about a four-foot diameter. The tube was probably 3 feet deep, so I wasn’t ever really inside it. As a special feature, it talked to me in a deep voice (”Take a breath. Hold your breath. Breathe.”). I did have an injection that made me feel very warm, but I’m becoming an expert at getting injections.
2/18/03: Got the radiologist’s report today. He saw no evidence of affected lymph nodes below my diaphragm - YAY! Further evidence that I’m at stage 2A. The report also notes a “bulky adenopathy” in my chest cavity. If I’m going to get the Stanford V treatment, exactly how bulky it is determines the length of chemo, so Dr. Horning (the Stanford oncologist) ordered a chest x-ray.
Chest X-ray
2/18/03: Chest x-rays win for “least unpleasant test procedure”. No needles, no drinks, just standing next to a big machine with my hands in the air.
2/19/03: Talked with Sheila Breslin (Dr. Horning’s nurse), and she said that although she hadn’t personally reviewed the x-rays, the radiologist measured them for her, and it looks like my “bulky adenopathy” isn’t that bulky after all. Double WAHOO for today!!!
2/24/03: The tumor board has blessed it. I’m non-bulky!
Blood tests
2/18/03: Although the blood test that Dr. Francisco had done in late January had almost all the information the oncologist needed, I had some more blood drawn to check my ESR level (”something sedimentary something”). This, along with other blood counts, will be a baseline to determine how well I’m tolerating the treatment.
PET scan
2/21/03: The PET scan certainly ranked the highest on the hassle factor. The night before, I wasn’t allowed any starch or sugar (just call me Atkins Woman). That morning, I couldn’t have any breakfast, but at least I could have water. My appointment was at 1:00, so after the final round of Medical Records Scavenger Hunt, I headed over to register for the test. Good thing I was early, because there was some confusion over whether my insurance company had approved the test. Luckily, the billing specialist in Dr. Horning’s office is the daughter-in-law of some family friends. Since I remembered her name, the PET scan registration person was able to contact her and confirm the approval.
Before the scan, they injected me with radioactive fluid, and I had to sit perfectly still (no talking even!) for 20 minutes to let it go through my system. I waited another 40 minutes before I was deemed ready for the test. The machine was a big tube, like the CT scan machine, but longer. Claustrophics need not apply! I lay down on the bed with my arms at my sides, and the nurse put some wide straps over my torso. Then it was 35 minutes of holding as still as I possibly could, while the bed slid back and forth under the machine. The worst part was, about halfway through I needed to sneeze. Luckily, I didn’t. You’d think that was all, but you’d be wrong. Apparently my kidneys retained so much radioactive fluid that it was impossible to see anything around them. I was sent off to drink a liter of water to flush them out (at least they let me eat a snack, since it was 3:30 in the afternoon), and then it was back in the tube for another 25 minutes. Just when I thought I couldn’t take another minute of lying still, the nurse came back in and told me I was done. This time, my kidneys were sufficiently dim that the radiologist said I could go home, with the warning to drink as much water as possible over the next few hours.
2/24/03: The nurse just called to tell me that the PET scan results were consistent with the CT scan. In other words, they didn’t find anything below the diaphragm, confirming the diagnosis of Stage 2A.
Best interaction with the doctor
me: Will these results be available for the tumor board on Monday? Doctor: They should be. Will you be there?
me: They have pictures of the tumors. They don’t need the actual tumors.
Summary
| Test | Pain | Hassle Factor | Result |
| Physical exam | Low | Low | Bumps on neck, ticklish most other places |
| Blood tests | Medium | Low | Everything pretty much normal |
| CT Scan | Medium | Medium | No affected lymph nodes below the diaphragm |
| Chest X-Ray | Low | Low | I’m not bulky! |
| Bone Marrow test | High | Medium | Negative for malignancy (I love saying that!) |
| PET scan | Medium | High | Kidneys have a tendency to glow, otherwise consistent with CT scan |