So Itchy I Can’t Sleep

It’s nearly 3 AM and I haven’t been able to sleep yet. I have a cold with a bit of a runny nose, but it is my itchy skin that is keeping me awake. When I finally finished the Prednisone, on December 15, the hives were disappearing and did not flare up; that is, not until a week later.

On the 23rd, I went to the doctor. She told me that the water pill that I took in conjunction with my blood pressure medicine was sulfa based. I am allergic to sulfa, but had not reacted to this medicine any time in the last year since I became allergic to sulfa, as far as we know. We switched the blood pressure medicine and dropped the water pill. I also got a fresh prescription of Atarax for the itch. The change did not help, nor did the Atarax. I was taking it every six hours along with two Benadryl staggered between doses. My muscles were tired and weak and I was grumpy with unpredictable mood swings.

On Tuesday evening, Dec. 28, Bethann told me that I was tired, grumpy and unusually hard to live with, so I should call the doctor (since I was obviously still sick). The next morning, I called Dr. Jonathan Cohen, the infectious disease specialist. He had told me to keep in touch. He took my call on the first try. I told him that Bethann had told me to call him, since I was tired and grumpy and hard to live with. I told him that the hives had reappeared. To that, he replied, “Interesting.” He said it in that Dr. House way that you never want to hear from a doctor, because it means that you have entered uncharted waters. He also told me, “Dude, you’ve been sick since I first saw you in the beginning of October. You have every reason to be tired and out of sorts – wearing the hair shirt.” I asked him if he could give me an answer that Bethann would like. He started with, “Well you should be feeling a little better since you talked to a doctor.” (Dr. Cohen can be a funny guy!) He then told me that I should marshal my more positive energies that he knew I had and try harder. He told me to go back to my PCP sooner than scheduled and to make an appointment with an allergist. He told me to move quickly on that, because allergists are notoriously slow and I would be lucky to get an appointment within 30 days. He also told me to go to the city to find an allergist. My case was more exotic than what any of the allergists he knew here had ever handled.

I saw Dr. Oswald on Monday, Jan. 3. Since the side effects of Atarax had gotten worse and it was no longer effective for the hives, she switched me to 5mg Xyzal per day and 20mg Famotidine (Pepcid AC) twice daily. This regimen took care of the side effects, but still isn’t altogether effective against the itch. Since I started writing this post, I looked up Famotidine on the NIH website. Interestingly, among the possible side effects are itchy skin and hives. Like I keep on saying, this whole episode is like playing Whack-A-Mole!

My Recent and Current Illness

Several people have told me I should write about my recent illness with the twists and turns it has taken. I will try not to make it read like one of those old folks talking endlessly about their sciatica or irregularity. It will not be written in chronological order, but memories and vignettes will be posted as if they were written on the day they happened. When I am done it will be able to be read in sequence from October 3 to the present and beyond, God willing.

The story has many angels and a few demons. There are many blessings and a few lessons to be learned along the way. A central character in the story is Grand View Hospital, Sellersville, PA; a place I found to be staffed with people of integrity, compassion and skill. A good friend asked me on Sunday, during coffee hour, “Did it do you any good?” I answered him that I was doing a good bit better to be out of the hospital. He said, “No. Are you better? It would be a shame to go through hell and back and not to have anything to show for it; to not be improved by it.” I began to weep and said, “Yes. There were many blessings.”

You may choose to keep checking back to see what new articles I have written or wait a few weeks and read them at once, in order. Feedback, comments and questions are always welcome. Thank you.

Death in the Mirror

After four or five days in ICU, I finally looked in a mirror and saw death staring back at me. My  face was all dry and wrinkled as if I had aged by 15 years in one week. It was startling to see. I examined the shape of my creases and noted that they weren’t smile wrinkles, but showed more worry and sadness. They reminded me of my depressed, alcoholic Grandma Ingham. I tried to scrub and scrub to get all the dead flakes of skin off, hoping that would allow my skin to smooth again. I was hoping that I would still have a shot at smile wrinkles, those magnificent, friendly crow’s feet; marks of a happy life.

Twice in the prior four weeks I had left my home for the hospital emergency room thinking that I may not be coming back. I looked around my house and yard and lamented all of the unfinished projects I was leaving for Bethann. I also admired the diversity and color of the front yard that I had turned into flower beds last summer and wondered if I would get to see them come up again. The third time, which was the most serious, my mind didn’t go there. I was too distracted by the burning all over my body.

Courting Disaster

Disaster is about the only thing that gets courted these days. Men no longer court women, nor do the ladies expect to be courted. Instead, young men and young women engage in flirtation, dating and sexual conquest, much of the time postponing marriage well past their youth. The sex drive is greatest in young people, especially in young men. To ask them to wait until they are in their late 20’s to wed is truly courting disaster. Sex outside of marriage is called fornication, which carries the connotation of filthiness or uncleanness. This is not an outdated label to make us feel guilty. Sin is called sin because it is something other than love and it gets in the way of love. TV sitcom dads tell their kids that sex with no thought of marriage is OK if two fifteen year olds “love” each other; just use protection. This attitude robs adolescents and young adults of an opportunity for great joy and weakens marriage.

We learn in Orthodoxy that there is no feasting without fasting. This discipline of our eating habits is instructive for chastity and fidelity. I can’t count the times I have heard people say about Thanksgiving or Christmas something like, “Yeah, we have to eat turkey again.” In this land of plenty, with meat served for breakfast, lunch and dinner, every day of the year, turkey and ham have become commonplace. There’s little special about a feast for most Americans. On the other hand, if you are part of an Orthodox community that keeps Great Lent and Holy Week, then breaks the fast together after the Paschal Liturgy; you understand how truly exciting cheese can be; let alone turkey and ham! The Apostle Paul pointed out the connection between fasting and chastity by quoting a pagan folk proverb that used eating meat as a metaphor for sex. “Meats for the belly, and the belly for meats: but God shall destroy both it and them. Now the body is not for fornication, but for the Lord; and the Lord for the body.” [1 Cor. 6:13] Some modern versions of this pagan proverb are: “If it feels good, do it.” and “It’s only natural.”

Sex is supposed to be the seal or consummation of a mutual covenant and pledge of love between a man and a woman who are part of something larger than themselves: a family, a community, a society, a culture. Practically, it is the means by which new humans come into being. As Orthodox Christians, if we truly believe our stated theology that every human being bears the image of God and is a unique, unrepeatable reflection of his Glory; then we need to do our best to respect, honor and protect the potential of sex.

With all of the world’s casual attitudes toward sex along with its temptations and pressures to conformity, it takes more than a three word slogan like “True love waits” to equip young people to make the hard choices to avoid fornication. We need to be transformed in our thinking and approach, as a community, to provide more appropriate settings for socialization of adolescents and a proper framework for courtship that recognizes natural urges, yet protects chastity and love.

(to be cont’d.)

What a Wonderful Daylily Season!

Our first daylily bloomed on Mother’s Day, May 9. There were daylilies blooming in our yard every day except two from then until September 15. The Bitsy daylily rebloomed twice and is blooming today, November 4. I am always amazed by daylilies, but this was an exceptional season, with the extreme heat and dry spells, and still no hard frost.

One day in late Spring, I was doing a little weeding in front of our house. An old lady was walking slowly along the sidewalk. She stopped to admire the flowers. She said, “You know that God loves you, don’t you? When you see flowers like that you have to know that there is a God and that He loves us!”

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. Osuego 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, middle-aged 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.

(The header photo is Jerry at the birth of his son, Nick.)

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 tried 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 and report 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!