Dealing With Illness

The Story

The thing I remember most was having to give myself the bad news. After 10 years, I knew the tumors were back but I tiled to fill myself with every optimistic thought I could imagine. For almost every day since I had the first tumors removed I have been reminded that this day could come. Every twinge in my back, every pain down my leg told me that I could move into the class of patients with "recurrent" ependymoma. I had convinced myself it could be scar tissue, a disk rupture or numerous other things, everything but another tumor. My legs had been weak for over a year. Sciatic pain keeps me awake some nights and typical of the male species I had avoided going to the doctor and especially avoided the Mighty MRI. They always told bad news.

The Appointment or "The doctor doesn't see patients without an MRI"

I resisted opening the envelope all the way to the doctor's office. I'm always early for appointments so as I sat waiting for my wife to join me, the stress became unbearable. The pictures meant nothing to me but my eyes quickly found a report. It had been written by some faceless unknown MRI doctor and descriptions of tumors jumped off the page. Not the one I had fought and beat in '87 but three new ones. I tried to remember my metric system as I read descriptions of growths 3 cm by 9 cm occurring along L this and L that. The details didn't matter. I cursed out loud. First at no one in particular, then at the faceless doctor I had never even met. I asked God why. I shouted and cursed again. I guess if you have to hear bad news you might as well give it to yourself. The appointment became anti-climatic. The doctor looked scared and said, "Let's get an MRI of your upper body and head jut to be safe." I immediately thought "At least that will be O.K, I can deal with this". The Doctor talked about the effects on my legs and the risks of surgery. That's really all I remember about an appointment that lasted at least an hour. My wife had her car and asked me if I was OK to drive home. I told her I'd be O.K. I knew I needed the time to talk to God. The talking quickly became screaming and blaming and then returned to asking why. It’s funny how my prayers throughout all of this have always returned to asking why.
When we got home I was relieved to find my daughter not at home. She lives with us and just graduated High School. My older daughter is living at college and I knew I could tell her over the phone. I dreaded telling them the news face to face and while we waited for her to come home my wife and I talked and cried. We talked about crazy things like going on a cruise and how we could face anything even a wheelchair. Looking back it's not surprising to me that we talked of something we've always wanted to do but had not taken the time. We always thought there would be later. You know, after the kids were gone. We also got the *for better or worse” subject out of the way. My daughter came home and it was hard to tell her. I called my older daughter later and that was hard also. I need to be a rock for my daughters. I'm sure it's nothing they expect but it's an expectation I've put on myself. I didn't like letting them see me weak and upset. They responded like I knew they would, sending me upbeat cards and notes and just loving me. They are terrific kids. That night I was numb. I remember opening a bible and finding a holy card of St. Jude, the patron Saint of Hopeless cases. I thought to myself how appropriate. I spent the night wanting to cry out, to scream but I was home now and had to behave. Instead I prayed quietly to St. Jude.

Walking
I've always tried to be a walker. I admire folks who park in the second lot so they can get a little exercise going to the office. Personally though I'm a couch potato, even driving the three blocks to church each Sunday. Then why am I so scared to death of not walking. I know there's this macho Italian thing going on but that's not all of it. When I had my two surgeries ten years ago there was the threat of not walking but I didn't let it bother me. That tumor was small and I was full of faith and optimism. The things growing in me now are big and seemed to be all over my lower spine. This time the Doctor looked like he meant the threats and was not just covering all the bases as Doctors always seem to do. The day after my first appointment was a Saturday. I got up early with every intention of going on the Internet to investigate paralysis and wheelchairs and make some kind of effort to address my fears. As I sat in front of the computer I began to cry and with one quick key stroke that I know now came right from God, I instead did a Yahoo search on Ependymoma and Treatment. Pages of references came up and I began a quest for knowledge that is still going on. I thank God for that change of direction and attitude. I remember initially feeling that a prognosis of death would have felt better than the paralysis I feared. I don't feel that way any more. Don't get me wrong, not one day goes by that I don't at some time become completely enveloped with a fear of paralysis but now I tend to focus more on getting better. I often think what the many handicapped people I see would think of my fear. I have often been tempted to stop someone and discuss it with them but I don't have the guts. One thing that does bother me though is when someone tells me to just be grateful you're not as bad as some folks. That just doesn't make it with me. I liked it best when there was nothing wrong with me. I didn't need this to happen and either did they. I have always been an empathetic person. I pray for every one's health. I often just pray for myself first now. Is that wrong?

The Net

I can't say enough about how powerful a tool the Internet has been. The wealth of knowledge and the ability to converse with folks helped get me through those first few weeks of my illness. I found pictures of tumors, records of successful surgeries and talked with supportive people all over the country. I scanned my MRI report into a Harvard database. Along with God and my family it has given me the hope I needed after those first few days.

The Second Appointment

We waited over two hours to see the Doctor. He had the new MRI’s of my upper spine and head so I had to wait to be given the news this time. I remember seeing the doctor quite a few times dart out into the waiting area during the time we waited but I don't remember if we made eye contact, I kept leaving the office walking down the hall and praying to St. Jude. I must have done this a half dozen times in the two hours we waited. Finally it was my turn and the words I had rehearsed in my mind so many times flashed one more time. "At least there are no more tumors, we can beat this thing. I'll tell him all I read on the Net." Instead his words came at me like a brick. "There is another tumor in your thoracic spine." Well, at least my heads O.K. “and you have two small tumors in you're brain." Monica came over and asked me if I was O.K. I think I remember laughing. I had waited two hours to hear that I had three more tumors. Hell he could have sent me a postcard in less time. I was mad. It was the only emotion I had left. I remember thinking that I had to find a place to treat these things. I felt this guy looked scared. He had never even seen MRI's like these. I wanted to go to New York or D.C. or Philly, somewhere where I wouldn't be such a strange case. Before I could say it he responded as if he had read my mind. He was going to make some calls, find somewhere with experience with these tumors and their treatment. I was officially a weird case, an unusual case. I didn't cry or scream on the way home. I didn't pray to St. Jude. What good would it have done? In less than five days I had been told I had 3 tumors growing on my Spinal cord and two in my lower brain. Unusual, uncommon tumors, more commonly found in children. St, Jude, pray for me, because I was indeed a lost cause.


Support

People as a whole are great when you're sick. I come from a big family and worked for a big company so the outpouring of support was overwhelming. I love the folks who called me. They were my friends and family and it meant a lot to me. After about 25 calls however I got tired of telling the story and re-experiencing the Doctor's visits. I began to wish the phone would stop ringing. I also got lots of free advice. The benefits of Shark, Garlic and most every other living thing rang out over the phone and the Internet. I was told about aunts, sisters, neighbors that had a similar thing and about Doctors, Hospitals and Saints that really helped them. I took it all in. I even wrote most of it down. I guess the bottom line is that I had to make a lot of decisions and the advice helped. However when the time came I had to make them one at a time based on what I felt in my gut. It's the only way I could do it. I thank God for the support. The power of the support really was and continues to be that I know I am not alone. It started with my wife and the girls and went to a person I was led to in New England who was living with the same tumors I had. I felt the prayers of others and relied on them when I couldn't talk to God myself. This has happened often during this illness. I often don't know what to ask God. About once a week I yell and wait for an answer. He often sends it through the people around me. My wife has to be my rock, attending every appointment and test and helping to keep me focused and not feeling sorry for myself I have also fallen back to the basic faith that I learned as a child. I have made novenas and anointed myself with oils and holy water given to me by friends with a stronger faith than me. I took none of this lightly. I have always believed in God's power to heal and did these things with a childlike faith. However now months later and in treatment I'm coming to grips with God's methods. I was first disappointed and up set that I have not received some miraculous healing. Then one night recently He told me (Yes God talks to me.) how my Doctors have also asked Him for the power to help me. That conversation meant a lot to me and helped me to realize that the miracle I was looking for could also happen over time. I want to tell you about them next.

The Surgeon and the Oncologist

Later that first week my local Doctor called me and told me his search had found a team at Jefferson in Philadelphia that could help me. Jefferson had been on my short list so I was excited to make the appointment. I had become a militant patient and was prepared to move on if things appeared not to meet my needs. Instead I fell in love with a team of folks who gave me my first real hope.

The Surgeon

The first appointment was with a surgeon. The appointment was made so I could see him in between surgeries. This was so I wouldn't have to wait over a month for an appointment. I first read this as bad news about my condition but also thought that maybe it was real concern for me. The second thought was right. When my wife and I arrived we were hustled up to a surgical ward to wait for the doctor to complete his current surgery. We both felt like fish out of water but were quickly moved to a nurse’s lounge to wait. The doctor arrived shortly dressed in full surgical garb. I remember thinking, "Maybe we can get this thing taken care of right now." Instead after introductions, he took my MRI's, put them on the wall and began to silently look at my spine. I will never forget his first words of reaction. "This one in the middle is identical to what I just worked on." He had removed an ependymoma not last year or last month but within the last few hours. We talked about the other tumors and though the news was still bad I saw the confidence in his face that I needed to see. He told me about a new member of the staff; a Neuro­oncologist and suggested we get an evaluation of potential Chemo treatments before making a decision on where and when to do surgery. I had expected this. I was a semi-educated patient by this time and knew surgery then chemo, chemo then surgery or chemo only were my three options. I then proceeded to put my foot in my mouth by asking when I could see him. (The oncologist.) I was immediately advised that him was instead a her and 5 years of corporate diversity went out the window. Then something strange happened that showed me that with these doctors I was playing in the Big Leagues. The surgeon went to the phone and called the oncologist and there was no call backs or messages but an immediate connection. I was able to hear one half of that conversation; I thank God for this because it was a turning point in my mental approach to my illness. In the middle of overhearing talk of tumor descriptions and locations I heard these words. "This guys only 48 years old. We have to keep him walking." I began to cry. I had shed many tears during the previous two weeks so when my wife looked over at me her immediate question to me was. "Why are you upset.” My answer probably shocked her. "I'm not upset, I'm happy. I finally have some hope." These words spoken by the surgeon defined the way I was to be treated by the Doctors and Nurses at Jefferson. Their focus was on keeping me walking. I t sounded good to me then and it still does today. I have not seen the surgeon since that day. We may be destined to meet later in this fight to continue walking but I will never forget his confidence and direction. It set the stage for what was to come.

The Female Oncologist

I took a lot of ribbing at work when I told them about the Female Oncologist. I am by no means a chauvinist but I would classify myself as conservative when it comes to female doctors. It's that macho Italian thing again. My coworkers knew this and had great fun reminding me that I was to be cured by a woman. The really funny thing was that after one hour with the female oncologist I believed it would happen. We had a little wait for
that first appointment. I was prepared with pages of questions and potential treatments I had read about. Instead I sat down with a woman who just started to talk to me; I interrupted a few times showing her my list and trying to force her to get down to business. Finally she explained to me that we would take about 4 hours (two appointments) to learn a little about me and my condition and to educate me so that together we could make a treatment decision. I immediately relaxed. I wanted to be involved. I was used to Doctors who talked while you listened. I spent those first 4 hours with her listening and asking questions. She taught me how chemotherapy works, how bone marrow is affected. Nothing was sugar coated. (The facts mam, just the facts) She did however remind me that her focus was on keeping me walking. With those words and her attitude she won my heart while trying to win my mind. During that second visit I also met my Oncology Nurse who would supervise my Chemo when the time came. She was a bubbly Philly girl who lifted my spirits that day and continued to do so every time we met. What a wonderful team these two women made. It was like God had brought them together just to treat me. St. Jude, is that possible?

The Decision

I'm scared to death of another back surgery. After two surgeries I know it is exactly as people say. You're back is never the same. I also knew in my heart and also saw in the eyes of the doctors that this would be risky business. Words like paraplegic and loss of function were mentioned more than once. The "loss of function" always got me. It doesn't sound so bad until you look behind door number three to find out the possibilities, no sexual function and a colostomy bag. That's why I'm scared. With that in mind I walked into appointment number 3 with the female oncologist a little worried, I knew what I wanted and had become a semi-educated patient, yet I was still a prisoner to her opinion. This was for good reason. I had grown in respect for her during the first two visits and more than that I trusted her. The appointment began with her talking and me listening, which is hard for me. She told me about discussions she had had with Doctors at Hopkins and Sloan Kettering about my case. She was really making me feel good because for the first time I got a taste of the scope of this Doctor and how far she was willing to go to save my legs. They had a treatment prepared for me. The chemical was Carboplatin and I would receive eight treatments over ten weeks. We also discussed a "cocktail" treatment I could be given depending on the success of the Carbo treatment. Because of this we got into a long discussion about bone marrow and the effect the chemo might have. We agreed that I should prepare for a marrow transplant and that the new way to do this was to collect what were called "stem cells'1 and save them for later use. I don't remember just when during this conversation she slipped it in but all at once she said, “The surgeon and I agree that we are not going to do surgery at this time." We were going to try and shrink these things with chemicals. Chemicals and prayer. This had always been my first choice and that was the recommendation. I was pleased. Isn’t it great when a plan comes together?

Stem Cell Collection

I don't have a lot to say about Stem Cell Collection. I had to have a shunt put into one of the arteries in my neck and then spent 2 days hooked up to a machine which circulated my blood extracting the cells. They gave me a chemical called nupogen which gave me the worst headaches of my life. The kind of headaches I had only heard about. Suffice it to say that I owe the nurse who ran the machine a visit and apology because I was one miserable S.O.B. for those two days. The collection went well and I am the proud owner of two bags of Stem Cells which insure me of a successful Bone Marrow Transplant if needed in the future. I also had the shunt replaced. It was a bulky thing with 3 tubes coming out of my chest. I now have a port under my skin for chemo and blood work, At 49 years old I had my first artificial part.

Chemo

Let me just get to the point, the first round of chemo wasn't so bad. I got pretty tired with a little bit of stomach upset. About midway through the process my blood counts dipped a little but all in all it wasn't the horror I had expected. I think this can be attributed partly to the drug itself (Carboplatin) and partly to the chemicals they give you to keep from getting sick. There is however a down side to this, All through the treatments I wondered about the effectiveness of the drug. It was kind of like morning sickness and a pregnant woman. If I'm not upchucking1 how can this be working? It was also a time of great mental gymnastics. Every twinge I felt, every good or bad day I had I equated to the effectiveness of the drug. It was like being on a chemo roller coaster. One day I was experiencing a miracle, the next day I wondered what the point of all this was.

Numbness
My feet and ankles are numb. It happened about six months ago and was the final straw that got me to see a doctor. My daughter recently asked me what it was like and the best way I could explain it was to tell her that it was like having two logs for legs. Because you're feet are numb you loose that tactile feeling that keeps you balanced when walking. A cane helps but it's hard to explain how tough it is to navigate. Think of how you feel when your foot falls asleep and you quickly get up. As I progressed through the early treatments I had great faith that this would go away. It was the sign I was looking for. I had always figured that if it was the last symptom to occur that it should be the first to disappear. I actually remember coming home after the first treatment and waiting for the numbness to lessen. It never happened. I discussed it with the Oncologist about halfway through treatment and accepted the fact that I have nerve damage caused by the tumors and that it may never go away. The persistent numbness is the single biggest disappointment I've had during this whole experience. I guess because like all of us who experience our limbs temporarily falling asleep I wait for them to wake up. Sometimes a hundred times a day. It just hasn't happened.

The Chemo Nurse (Not to be confused with the Oncology Nurse)

The chemo nurse actually administers the chemo. What a great young lady. Like the Oncology Nurse she's another Philly Girl who always kept my spirits up. Our first or second time with her she told us about a trip she had just taken to Mejagori, a shrine to the Blessed Mother. She gave me a blessed medal that day and I have not taken it off. I hang on to faith because of people like her.

What Next

I saw the Oncologist after the last treatment and was kind of upbeat. I had tolerated things rather well and I was feeling pretty good. I had been fishing the week before and that was a great uplift. I had thought only a few months before that I might never go again. I was glad the treatments were over but at the same time I was ready for round two she was great. We talked about what we had been through and a little about the future. Every time I asked about what was next I was told to wait. We needed to see what had happened. We needed Mri's. I had only one request. I didn't want to see them. I didn't even want to touch them. My experience with the first Mri’s was something I didn't want to go through again. If there was bad news I wanted to hear it from one of these wonderful women God had led me to. Let the Oncologist tell me) let the Oncology nurse tell me. It wouldn't seem so bad coming from them. Just don't let me read it to myself

Mri’s
I had Mri’s of my entire spinal column and head. It took two appointments and almost 5 hours and it wasn’t much fun. Though I grew up in the sixties I never experimented with drugs. I don't know weather two Percocets and a Valium qualify as heavy drugs but for those two Mri’s I was transformed back to the Sixties. The Jefferson Airplane's White Rabbit became my theme song. I remember that I kept thinking that I was going to screw things up by walking around when I was supposed to be lying still. I asked the nurse if it was OK that I was moving and she just laughed and asked me what kind of pills I bad taken. Probably she had seen people in this state before. I guess some folks think it's kind of neat to be in that state all the time. I couldn't do it. Two days as a druggie was enough for me. On the serious side they gave us the films at the end of the second day. My future was two feet from me driving home but I didn't look. I was too afraid. I had 48 hours to wait to see the Oncologist and I'd rather she see them first. At this stage I didn't know what good news was. I would need her to explain it to me.


The Verdict
The Oncologist saw us right away. I recall thinking that things were already going better than the first time I did this MRI thing. We sat and made idle chit chat for a few moments and then she began to put them up. First the older ones. I saw the tumors clear as a bell and memories of bad days came rushing back. Then she began to match the new with the old. From about ten feet away they started to look the same. I squinted to see something, anything that looked smaller but I couldn't. Finally after what seemed like an eternity she muttered, "There doesn't seem to be a whole lot of change here." I moved closer. My wife asked me if I was OK. I said I was fine. "what about the small one's in the head?" "There still there." Was her answer. The Oncology nurse walked in. She had been seeing another patient. I was glad she was there. I didn't cry. I didn't scream. I listened. They told me that things were positive. There was no new tumor and the way ependymoma's seeded that was good news. They had not gotten larger. After 5 months that was good news. I began too feel better and today as I write this weeks later I'm still not sure exactly how I feel. I try to dwell on the positive words those two fine ladies gave me that day. For instance I don't know how I would have reacted if there had been more tumors. That's what I focused on going home. For the first time in 6 months the news wasn't worse than the time before. It was the same.

The Future t
The Oncologist called me a couple weeks later and told me the films had been officially read. The news was good. No new growth. However she had talked to Sloan Kettering and they wanted to look at my films. They would be taken to some type of Brain Tumor Conference. I asked her if we were going to be famous and I got no response. I imagine Susan Sarandon could play her and Debra Winger the Oncology nurse. I would play myself because I'm the best person for the part. So I'm waiting now. She is consulting with other doctors to see what to feed me next. It may not be for a few months. Its summer and things are kind of normal. I'm fishing and working on the beach place. My young one goes off to college in a week or so. I'll miss her. My older daughter is coming home to finish college and it's good to have her back. My wife continues to support me but I think some days is annoyed with me and my moods. I love her so much for being there for me through all of this. My feet are still numb and my legs are kind of weak but what the hell, I'm still walking!

Prolog - 2008
This was written 10 years ago. I did have to have the Bone Marrow Transplant. I was in a special clean environment for almost a month and was basically killed and brought back to life with my own Stem cells. I do not remember much about that time. I was pretty sick for about 3 months. I have had MRI’s every year until last year with basically no growth otr new tumors. I decided that this was enough. I did promise the Doctor that I would run back to him if I experienced any change in my symptoms. My legs are somewhat weaker but I still go to work each day, drive my car and catch an occasional flounder. I've been given a great Grandson. He doesn't understand why I can't run around with him so I make up for it by rolling around on the floor with him. I've rediscovered swimming and swim a 1/2 mile twice a week. God, my family and Parish have been good to me. On the good days I thank Him and on the very bad days I still yell at Him. God understands!