Visitors Bearing Gifts

Sunday afternoon and evening, I had several visitors to my hospital room. I do not remember who all came. Perhaps you can cut me some slack on that. I was on morphine and Percocet; and still felt pain. I think Vladimir was there. Irene came and brought a most thoughtful gift: a small CD/tape/radio stereo, along with the loan of 10 liturgical CDs. That helped me get through the nights. The nurses and aides all enjoyed them as well. I think Dr. Joseph Kyriakos visited me, but it could have been another doctor. There was a doctor, who is not my doctor, but a friend. I received lots of visits like that. It was interesting to watch the aides or nurses excuse themselves, thinking that they were interrupting a doctor’s visit and we had to explain it wasn’t official; he’s just my friend not my doctor.

I should have had a guest book for visitors to sign. That way I would know who visited when. Thanks to all! You know who you are. I was blessed by your presence.

PICC Line Installed & Biopsy Taken

It was Sunday morning. On any other week, I would be in Matins at St. Philip Antiochian Orthodox Church, Souderton. Instead, I was being wheeled down to a room with a CAT scan machine. Steve even headed my gurney into the room in the correct direction. It was a tight fit. The room obviously had not been built with this huge machine in mind. They gingerly slid me from the gurney onto the bed of the machine. They fed me into the machine feet first.

While the machine was imaging the area, Dr. Oswelo carefully snaked a line in to take a biopsy of, or a sample of the fluid from the sac that had attached itself to my spine at T10-T11. He then installed the PICC line from my left forearm for the intravenous antibiotic. It was going to be a long haul.

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body  the extremities. *

He was a sweet, gentle, older man, with what sounded like a hint of a South American accent with kind eyes. I thanked him for working on a Sunday morning. He was cheerful and that made all the difference. I don’t remember any unpleasantness in the procedure. I just remember this beautiful man.

Accidental Health Advocate

On Saturday, October 16, one of the last things the host of Marketplace Money on NPR said was something like: “Before you go to the hospital, you should make sure you have a health advocate who can help you through the process and look out for your best interests.” She did not say how to find such an advocate or what his or her qualifications would be.

Dr. Jerry Burke became my health advocate. It happened in an ad hoc way. He heard that I had been to the ER and took a look at my x-rays and such. When he heard that they had read this as cancer, he intervened. He asked the radiologists if they had read my health history. Cancerous tumors on the spine virtually never are primary cancers. They are spin-offs from a cancer someplace else that is not responding well to treatment. He pointed out to them that I had no history of cancer, but did have a history of staph infection. He told them to get me into the hospital and start treating me for infection. They could still take their oncology biopsy if they really wanted to. It just would be a good thing if they didn’t let me die of an infection while they were waiting to do it. He kept pushing, going so far as to call my primary care physician to persuade her. She called me on Saturday, Oct. 23, to tell me to go to the hospital.

I was not aware this was happening behind the scenes. This was just the first time Jerry saved my life.

Leaving Home

Saturday morning, I got up, washed up and got dressed in sweat pants and a longsleeve T-shirt. I hobbled downstairs, clutching the handrail, moving one step at at time leading with my bad knee, so I wouldn’t have to bend it much. I had a little breakfast with Bethann, before she had to leave for work. Serge Kaminsky came over to stay with me. Bethann arranged this, because I was in so much pain, she didn’t dare leave me alone. I took two Percocet at 9 and settled into the recliner. I dozed for a little bit. The pain returned before 10. The Percocet had already worn off. I was miserable. Serge was quiet and patient.

My doctor called sometime between 10 and 11 and told me to go to Grand View Hospital’s Emergency Room. They were to admit me and start treating me for infection. As I’m leaving the house, I looked around and try to take it all in. I thought this may be the last time that I see this place. I thought of my unfinished projects, the messes in the barn and my office. I looked at the garden that I had planted earlier this year, with some flowers still blooming and wondered if I would see them come up again next spring. I grieved for my family having to clean up after me.

We didn’t have to wait long to get into the ER. They tried to get blood and had a terrible time, because I was so dehydrated. After several attempts to get a line in me for drawing blood and for IV fluids, a man from the IV team at the hospital took his time and brought out his full arsenal of tricks and got a line into me. I think by this time Bethann had arrived after the half day of work and Fr. Noah may have been there, too. Serge was still there. We thanked him and finally persuaded him to go home. It was mid afternoon.

An orderly came to take me for some x-rays. I make it a practice to ask people their names. Ages ago I worked in a hospital and I observed how people who push gurneys around all day or deal with one specialty or another can treat the bodies they are dealing with as just so many widgits. By the same token, I have seen patients treat orderlies and nurses aides as if they were just worker drones. So if I engage them by asking their name, it serves as a gentle reminder that I am a person, not just a gurney that may have uncooperative wheels at times. It also reminds me that these are people at work. If I show them human respect, both of our days will go better. At any rate, I asked the orderly his name. He told me it was Kevin; then asked why did I ask. I told him it was so I could yell at him if he messed up. Without missing a beat, he said, “O, my name is Steve.” Later I thanked Steve for not banging me into any walls.

Sometime that evening, they moved me up to a private room on the third floor, with a window facing North over the main entrance, with a view of the fields across the street and Sellersville, Perkasie and the Delaware valley off to the right. They gave me better pain meds. I still had pain, but I was sensing progress. Movement had started and recovery became thinkable.

It’s Probably Cancer

A doctor read my MRIs and concluded that I had a tumor about the size of a large plum or small apple attached to the interior side of my spine at T-11, T-12 and L-1. I was told to schedule a biopsy for oncology after I had been off of Valium for at least four days; so, next Tuesday. Then I was to wait another six days for them to read the results of the biopsy, then meet with the oncologist to discuss possible treatment options. Well, didn’t that just make Bethann’s and my day!

I was literally screaming in pain, had to stop the Valium, and face the high likelihood that I had cancer on my spine. I was facing the immediate reality of trying to cope at home for ten more days with exquisite pain in my back that seemed to be growing every day. I found someone else to go down to the city for The King’s Jubilee that night. I don’t remember who. You know who you are: Thank you and may God bless you!

Heavy Metal Music

On Wednesday, October 20, Hilary drove me back to Grand View Hospital for MRIs on my spine. I spent over an hour in the MRI machine for standard and with contrast MRIs. The huge machine makes a constant noise that sounds like it is straight out of “The Secret Life of Walter Mitty” starring Danny Kaye: “tapokitta-tapokitta-tapokitta.” Then there are the loud noises when it is actually taking images. I was so cramped and in pain, yet this heavy metal music nearly lulled me to sleep. Of course, I had taken Percocet and Valium before I went. That could have had some impact on my perception.

X-Rays, Synvisc & 1st ER Trip

Tuesday morning, I went to Grand View Outpatient Center for x-rays and to Upper Bucks Orthopedics for the first of three Synvisc shots into my right knee. This is the second round of these shots. They last about six months. I have no cartilage left in my right knee joint. I was back to limping and the knee was also hurting, but I hardly noticed that with the back pain.

Later that evening, I was in extreme discomfort and was running a fever of about 103. I called the doctor’s answering service. My doctor called me back and told me to go to the emergency room. Bethann & I arrived at the ER just after 8 PM. They took vials and vials of blood and wheeled me down the hall for more x-rays; then wheeled me back. They poked and prodded, hemmed and hawed and basically told me I was sick, but they had no clue what of. Fr. Noah visited us and prayed and anointed me in the ER room. They kept us there until 2 AM. I kept telling Bethann to go home, since she had to get up for work the next day. I told her I would hitchhike home. She told me that no one would pick me up all disheveled with a pained grimace on my face. So she waited.

Inexplicable Pain

I started to feel a pain in my back on Sunday, October 3. There was no good reason for it, as far as I could tell. I hadn’t lifted anything incorrectly or slept on it funny. It just started to hurt. The pain gradually grew more intense over the next two weeks. On Saturday, Oct 16, I co-led a “Living on the Street” tour in center city Philadelphia for The King’s Jubilee. I barely made it up onto the platform to Mark’s place. I sat at his table and drank coffee while the rest of the tour hiked through the underbrush to visit Fred’s old camp. The pain had spread, so that now when I coughed, it felt like my kidneys hurt.

By Sunday, I was continuously miserable. That afternoon was our granddaughter Isabella’s birthday party in the park and I was useless to load or unload anything. Bethann made me promise to go to the chiropractor the next day. Monday morning, I called the chiropractor and my medical doctor. I got back to back appointments. First I went to the chiropractor. He examined me, doing that thing where he pokes his fingers on either side of my spine working his way up the back. He didn’t find anything seriously amiss, but one point where he touched on the left side in the middle of my spine caused excruciating pain. He did a minor adjustment and put heat on my back. He was mystified. There was no chiropractic cause for the kind of pain I was having.

I went on to see my doctor. She examined me . I told her of my experience at the chiropractor and that I was afraid it must be something in my organs, perhaps my kidneys, that was causing the pain. I gave a urine sample. there was no blood, so that made it less likely that it was my kidneys. She agreed that it did not seem musculo-skeletal in cause, but not sure, and ordered x-rays to be done the following day.

I was given a prescriptions for Valium for a muscle relaxant (since I am allergic to Flexiril) and Percocet for the pain.