Tears were shed last week. At times, I sounded like a wounded animal and while that is not glamorous, it is real.
I also had moments of brevity and strength and I am proud of myself for those moments; many people would simply not be able to discuss bone marrow transplants and the potential collapse of life as we know it.
I have been extremely sick since early November with antibiotic-resistant bronchitis/pneumonia. In November, I required 4 antibiotics, a breathing treatment and an inhaler to get well. December granted me a brief reprieve from the respiratory infection but I was still fighting for health through the holidays.
On January 2, the respiratory infection came back with a vengeance. It was much worse this time; the antibiotics which worked in November did nothing to clear the January infection. After multiple medication fails, I was placed on a very strong antibiotic, one that clears infections in most people. Even that very strong antibiotic did not do much for me until a steroid pack as well as an inhaler (which also has a steroid) were added.
My past success with immune boosters such as zinc, vitamin C, Oil of Oregano, super-foods, etcetera did not help me.
Last Monday my Oncologist gave me the choice to go to the ER or to her office where she would see me as an emergency work-in.
I have an Awesome Oncologist. She offers a sense of calm even in the worst of situations thus I chose her office, I wanted to see her and hear her peaceful voice. My father drove me to the hospital.
Many vials of blood were drawn so that she could run a myriad of tests. My initial blood-work that was available to her that day perplexed her because other than anemia, my CBC revealed a healthy white blood cell count, red blood cell count, healthy platelets. If the leukemia was back, most likely there would be an abnormality on my CBC. Of course there are much deeper tests to look for leukemia, but from the initial blood-work, it looks like I am still in remission; my chemotherapy is doing it’s job.
My Oncologist decided to send me to a Pulmonologist. She said that she could continue to prescribe antibiotics and chest x-rays but she wanted a lung specialist to look at me.
My father and I went to the waiting room and listened to her receptionist try to make an appointment with one of the lung specialists from the pulmonary group. We learned that their first available appointment was 2 weeks out; my oncologist said something and suddenly I was on their schedule for 8:00 AM the following morning.
Something I have learned over the past 15 years: when you are an emergency case, the doctors will find a slot for you. If they can’t, they will send you to the ER where they will see you and often admit you. We were grateful for the 8:00 AM appointment.
Thankfully, Dad drove me to the appointment with the lung specialist because I only “heard” about 50% of what was said; later my father was able to fill in the blank spaces for my family and me.
We are impressed with the Pulmonologist. He is knowledgeable, skilled, and has an excellent demeanor. He also has the gift of compassion.
There have been so many doctors over the past 15 years. The doctors who have the gift of compassion stand out from the others. It is easy to appreciate a person when they are vibrant, when they have on nice (clean) clothes and look their best but it goes against human nature to express appreciation and respect for a person when they are sick, dressed poorly and completely undone. Compassion is a gift, you can’t teach that to a doctor, they either have it or they don’t.
The Pulmonologist looked at my chest x-ray and the CT scan that was taken last March when I got pneumonia (2 months after being on my new chemotherapy).
He then began to explain something that crushed us. The chemotherapy I take is in a class of drugs which can cause pneumonia.
We had known that. However we thought that it was because it suppressed my immune system. We misunderstood…
I know that I will explain this incorrectly because I still don’t completely understand it. Apparently this drug can cause a chemical pneumonia in which there are little pockets of fluid throughout my lungs caused by a response to the chemotherapy.
My doctor said that the pattern on last March’s CT scan are suggestive of that chemical pneumonia and his concern is further supported by the fact that I did not respond to antibiotics, but did respond to steroids.
If this is the case, I will have to come off of the chemical. In my situation that means that I will have to come off of the chemotherapy that keeps my case of leukemia in remission.
At that point in our conversation, tears spilled over my cheeks and I said, “I would have to have a bone marrow transplant”.
He let me cry. He gave me that dignity. He did not belittle my pain or sadness. In fact, when he went to speak, I saw him swallow his own tears as he steered the conversation in a direction that had order, which is what I needed.
I thought of the many times when I used to work in hospitals and had to deliver hard news to patients and families. I used to watch them crumble and it hurt because, as humans, we share the common thread of understanding pain. I remember swallowing back tears knowing that I had to stay strong so that my patients could look to me for leadership.
My doctor did that for me.
He gave me a few minutes to cry and then gently guided the conversation a few steps away from the transplant topic.
He explained that we will take things 1 step at a time: there would be another chest CT. There would be a bronchoscopy with lung biopsies. The biopsies will reveal what is happening in my lungs. The biopsies will confirm whether or not this is an infection or if it is a response to my chemo.
During the moments in which he explained the next steps, I was able me to gather my emotions.
I nodded my head and verbalized my understanding.
My father said that the doctor made a statement that grabbed his attention. I really don’t remember much of what was said. Apparently the doctor said that his suspicion is that “the reason you have not been getting better is because we have been treating an infection that does not exist”.
We then went back to the potential transplant. At which point I understood that this lung specialist has probably worked with other patients on my chemotherapy, who probably faced my situation. He explained that if I was on a 1st tier drug we would have more options but I am on a 2nd tier and that does not leave many choices.
I took a 1st tier chemotherapy, Gleevec, for years. It kept me in remission for 6-1/2 years. In 2014 my case of Chronic Myelogenous Leukemia mutated and I became resistant to Gleevec. I was transitioned to a 2nd tier chemotherapy, Sprycel, in January 2015.
He explained that there is no way to predict which patients will have lung complications with Sprycel and that it can happen at any time; that it happens immediately for some people, it can happen 1 or 2 years after starting the drug for others.
I was half-way present and I had tears in my eyes but I formed cohesive sentences. I am really proud of myself for the way I gathered my thoughts despite the fact that I was hurting so badly. With a quivering lip, I told him the name of the Bone Marrow Transplant Oncologist who worked with me last year. This Pulmonologist has an excellent working relationship with that doctor. I told him that my sister is a 5/6 match which is considered a “Perfect Match” and he lit up with excitement for me.
I know that he was not truly as happy as he portrayed, because in an ideal world a bone marrow transplant would not be part of our discussion. In an ideal world, I would be successful and accomplished, medical bills would not have robbed me of everything I ever worked for, I would have children. In an ideal world, I would not be sick and I would not know this doctor.
When he left the room, I tried to talk with my father but we were empty and raw and sad.
From my position on the exam table, I looked out the window. It was one of the coldest days we have had this January. I stared at the leafless, lifeless branches on the trees and thought about how I feel like those brittle, lifeless branches. I felt grey.
Last Wednesday my husband and I spent a long night in the ER. My chemo can cause Pulmonary Embolisms in addition to Pleural Effusions and Pneumonia.The doctors spent the night ruling out reasons to explain why my chest pressure and difficulty breathing had switched to chest pain. In the end, we learned that the pain is because my muscles are so sore from all the congestion and coughing I have done since November.
Monday morning I had my bronchoscopy. It was scary; the Pulmonolgist was wonderful. She too has the gift of compassion. They took 11 biopsies from my lungs.
We will get the results next Tuesday the 26th. This week, I have also been getting results from various tests my Oncologist did. I don’t understand some of the results.
Have you ever had pneumonia? Have you ever had bronchitis or even a bad cold? It is a miserable feeling. I have had it for such a long time that I don’t remember the feeling of breathing easily.
I am tired, my family is tired. We are ready for Tuesday’s appointment because we will learn what is happening and then we will learn what our next step is.
Right now, I am savoring each moment that feels good.