I may have started celebrating too soon

I haven’t posted in a while, because to be perfectly honest, I just didn’t have it in me. What I did have in me was a lot of chemo drugs and a bad attitude. Some of you have heard the live updates of what has transpired over the last month. But most of you have not heard what was added to the mix this past week.

Let’s bring everyone up to speed:

The four month PET scan on April 29^th confirmed that the areas in my neck and chest cavity were all back to normal. YAY! But it also still showed the questionable area in my lower back. It was still there. All seven millimeters of it.

Both Dr. Asik, from Baystate, and Dr. Jacobsen from Dana Farber, recommended a biopsy to try to learn more. Dr. Asik had told me that the lone lymph node in my back was not responding to chemotherapy the way lymphomas usually respond. So maybe it wasn’t cancer. His words, not mine.

Ideally, the biopsy was to happen as soon as possible so that the results would be known before the next scheduled chemo. Apparently the scheduling department at Baystate did not get the memo. Despite many phone calls and elevated conversations, the black hole that is Baystate scheduling marches to the beat of its own drummer. The biopsy was finally scheduled for May 13^th, the day before my next chemo appointment.

The needle biopsy was CT-scan directed. Although I’ve never had that exact procedure, it was similar enough to the other biopsies I’ve had to be uneventful.

As I left, one of the nurses told me I could expect the results in five to seven business days. My last biopsy results came in three days, so I assumed they were just giving me the standard line. The biopsy was on a Monday. Each day came and went. I checked messages on both the house and cell phones twice a day. No messages. More homework on how to be patient.

The following Tuesday, May 21^st, I had a scheduled follow up with Dr. Asik. As usual, I waited almost an hour for the nurse to call my name. I started to envision what I would say if Dr. Asik tried to make small talk. He entered the room, extended his hand to shake mine, and said, “You have been waiting for the biopsy results.”

Over the course of the next five or ten minutes, he explained that the biopsy results were negative. No cancer cells were found. The lymph node appeared to be normal tissue. He could not explain why the PET scan had consistently shown this area.

After presenting all of the findings, he told me his recommendation was to stop chemotherapy. “We’ll continue to keep an eye on the area in your back with blood work and CT scans, but I see no benefit to continuing the last two scheduled chemo treatments.” He told me he would schedule a three-month follow up. Blood work and a CT scan will happen at that appointment.

I’ve been sprung!

I swung through the infusion suite. Hayley, my oncology nurse, was still there. I told her the news. Her face lit up and we hugged. Between sobs, I struggled to tell her how fortunate I felt to have been assigned the best oncology nurse in the group. We hugged again.

Being told I no longer needed chemotherapy was a little weird. You wait and wait and wait to hear this. When you do, it doesn’t quite compute. What will I do every other Tuesday at 8:30?

Little by little, it sunk in. Although it’s only about an inch forward, it’s forward. It’s not backward, and it’s not standing still. It’s going to be a while before the chemicals work their way through my body. From what I’ve read and been told, it’s going to take three or four months for some of the side effects to leave me and a year or more for others.

I started the next chapter of my life. I wondered when I would have enough energy to work full days. I thought about how long I would have to wear my wig and how I would manage the growing back process of my undyed, grayish brown, potentially curly, post chemo hair. I celebrated “No Chemo Day” on May 28^th by bringing in platters of bagels to share with my coworkers.

On the Sunday of Memorial Day weekend, I took out the new training journal I bought months ago. I weighed myself, recorded the disturbing number I have not seen on a scale since the last time I was pregnant, and recorded my thoughts about the one mile loop I walked around the neighborhood. “80 degrees, hot, sweaty, and breathing hard – out of shape, but happy to be back at it!”

Some time later that day or the next day, the “breathing hard” part became an issue.

I became aware that I was short of breath. I’ve heard the term “shortness of breath” before, but for the first time, I realized there’s a difference between working out and feeling out of breath, and experiencing shortness of breath. When you work out, you get tired, you sometimes get out of breath, but you rest and you feel fine.

I haven’t been this out of shape or overweight in a long time, so I didn’t really think too much of it at first. When you’re carrying extra weight, breathing hard is probably to be expected. It didn’t go away though, in fact, it seemed to get worse. The feeling fine part was not happening unless I was sitting. The short of breath part was happening any time I exerted myself – even walking from the living room to the kitchen.

I took out my handy Cancer Center how to binder, and noted “shortness of breath” on the list of reasons to call immediately. Oops.

For background, the medications used in chemotherapy kill cancer cells. Unfortunately, they also have damaging effects too. The standard chemo protocol for Hodgkin’s is ABVD, an acronym for the four medications given during the chemo infusions. I knew one of the downsides to Bleomycin, the “B” in my chemo mix, was potential lung damage. This has been studied extensively, so they now pull Bleomycin from the mix about three quarters of the way through the treatment schedule. This is supposed to give you the benefits, while reducing the potential damage.

Wednesday morning, May 29^th, I called my oncologist. He was out, so I explained my symptoms to his nurse. I got a call back from her later telling me I should come at 3:00 pm for a chest x-ray and blood work, followed by a 3:30 pm visit with the nurse practitioner. She arranged for a pulmonary function test (PFT) the following morning at 9:00 am. I had a PFT before chemo started, so this follow up would confirm if there has been a change.

I remembered the first test. It is meant to evaluate your lung capacity, so you are asked to blow in and out in various patterns several times. I knew there was no way I would perform the test to the same level I had the first time. I got through the test, but knew the results would definitely be different. The technician remembered me from the first appointment. We’re about the same age and had quickly established a good rapport. She probably told me too much, but shared some of the lung disease possibilities, and said I would probably be referred to a pulmonologist.

The call from the nurse practitioner with the official results came Thursday afternoon. She explained that the test confirmed there was definitely something going on, but they were not sure that it was damage from the Bleomycin. “It seems too long since you’ve had that drug to have side effects, and the way they came on seems too sudden. We also want to rule out a blood clot.” Huh?

Yesterday, at 7:15 am, I had a CT scan, which was negative for a blood clot, but showed damage to my lungs. While it seems weird to be hoping for a blood clot, I had been. Blood clots can be dangerous, but they’re treatable. Damage from chemotherapy drugs can be hard to treat and can be irreversible. There’s also a possibility that the damage has been caused by an infection.

So now I wait. Cancer free, but with lung issues. I meet with a pulmonologist next Thursday.

Stay tuned. Prayers, crossed fingers and toes, and positive energy are all appreciated.