(in the previous blog post, I reported I have recently been hit by 3 boulders and described the first)
Then along came boulder number two, crashing hard.
It was the middle of April. A Pet/CT scan found nodules in my lungs. A Pet/CT scan is very different from an X-ray. It does not just give you an image. It measures cell metabolism and activity. Unusual areas show up white, and the level of metabolism is assessed. I had two nodules that were classified as significant and fitting the criteria for malignancy. Seriously?!! Lung cancer? That would make three distinctly different cancers in five years? Who gets that? What kind of toxic blob was I? Why were my cells mutating so much? What’s next? OK. SLOW DOWN. DON’T GO THERE. You have no idea what is going on. There could be many explanations. My mantra became, wait for the biopsy, wait for the biopsy as I worked my meditation beads. I calmed down. I felt optimistic.
The biopsy was supposed to be a simple outpatient procedure. I would receive twilight sedation (still awake), get the biopsy, get an x-ray to make sure all was well, an hour later get a second x-ray, then home. Easy peasy.
A different radio station came on. I thought it would be smooth jazz. The biopsy seemed to go OK. I was in recovery, waiting for my second X-ray, munching on some animal crackers. I started to feel a little weird. I said, “I don’t feel so great.” In the next second, my smooth jazz station rolled over to deafening death metal. The room was spinning so hard I thought I would fly off my table; I got confused. I thought I would throw up. I could barely retain consciousness—the room filled with personal. I coded. My blood pressure was crashing fast. IVs were rapidly stuck into my arms. An ultrasound was wheeled in. I started seeing everything happen in slow motion. My viewpoint moved out of my body to looking down from above me. I calmly observed a scene of silent chaos. This is before they gave me drugs. I thought this is it. I am dying. Later I found out this was true.
I started to stabilize a little, came back from the sky, and all kinds of things were happening simultaneously and rapidly. The ultrasound showed my blood was leaking into my pleural cavity. They thought an artery was nicked. It turned out later to be just a vein. The staff was trying to find my brother to give consent for another procedure because I was still under the influence of anesthesia and could not provide consent myself. He was traveling and impossible to reach. They needed a very clear image so a chest tube could be inserted to start draining the blood. They wanted to inject a dye into me for the ultrasound. I am highly allergic to this dye and go into anaphylactic shock. There was no choice. They had to do it; they would pump me with Benedryl. Oh SHIT. This wasn’t good. My life was to be risked to save my life. Been there, done that, not good. A distorted vision of an anesthesiologist appeared over my shoulder. She explained that because I had just had anesthesia for pain, she could not give it to me again. She could give me more fentanyl but nothing for the pain. DAMN, this was going to hurt like hell. Time to experience next-level pain. Interesting.
I am very pain tolerant. I take myself far away. I do not make a sound; I do not whine; I do not complain. A large chest tube was jammed into me, and I heard an eardrum breaking, raw scream. I did not know what was making that sound. It was me. That was the first attempt. During the final attempt, I fell into a black hole.
I do not remember much about my first few days except the pain. I know I talked to my friends, brothers, and sons, but I don’t know what I said. I can not remember my room or nurses at all. Demerol dripped steadily into my arm and took everything else away. I went to another world and was no longer present.
In a few days, I was transferred to my home away from home, the stem cell floor in Prentice Hospital. Most of the nurses, orderlies, people who deliver food, room cleaners…. all know me well. I would be safe here. I became more aware, but the pain was still mind-blowing. There were nights I rocked in my bed, crying and yelling over and over again, “I want to go home.” Well, that was new.
Blood slowly dripped out of my chest tube for five days into a box on the floor as an IV slowly dripped in replacement blood. I could not walk or do much of anything. This was worse than cancer. I lost an incredible amount of progress I had struggled to achieve.
Finally, I could think enough to ask about my biopsy. Did I have lung cancer? Maybe there was some badly needed good news. The biopsy was inconclusive, and I was way too weak to do another one. My doctor said to me, “I don’t know why you are worried about lung cancer; you are way too frail to treat.” What??? This was Northwestern. They invent treatments. They never say never. They developed the double lung transplant last year. Couldn’t they pop another lung in there? I asked him, “no chemo, no immunotherapy, no surgery?” He slowly shook his head no. I thought I am so fucked this time.
About halfway through my three-week stay, two extremely young, unfamiliar doctors appeared in my room. They were from the department that did my biopsy. They asked me a few quick questions, they moved to a corner to put their hands at the sides of their mouths and whisper about me. It felt like a bad scene from high school. They returned and informed me I would not be strong enough to be released into a rehab facility. I would not be able to endure Physical Therapy. They would be recommending I get moved to a permanent long-term care facility. HELL NO! Not going to happen. They did not know me. They could not glibly make a life-changing decision for me—time to leave the lovely Demerol haze and get to work.
I went off all pain meds. I started sitting up in a chair all day. I knew the schedule of when everyone entered my room. I started slowly taking forbidden walks around my room, holding the bed at first. My beloved younger brother, my stem cell donor, my blood brother called my Doctors and very clearly told them never to let anyone use the words “Nursing Home” to me again. My PT was amazed at my progress. I had to get home. My twins would be graduating from HS in a few weeks, and I would be in the front row, and nothing would deter me.
After the three worst weeks of my life, I was discharged and allowed to go home mid May. I have PT 3 times a week now. I still do not know if I have lung cancer. A repeat scan still shows suspicious nodules. But I am still too frail to be treated. So that has gone in a box on a shelf for now. I have become disabled compared to where I was a year ago. I am usually out of breath and walk with great difficulty for very short distances with a cane. I cannot stand for more than about five minutes. I frequently need to use a wheelchair.
But I am home. At the end of May, I sat next to my brother in a wheelchair in the front row. My brother helped me stand, so I could applaud my sons marching past in their graduation robes.
Exercises in Equanimity 