Archive for March, 2014

When A Doctor Calls

March 25, 2014

Before I continue my narrative, I have to make a correction of sorts. Last week, I commented I felt somewhat embarrassed that so much time had passed… Well, I think I should have clarified it further that I felt somewhat embarrassed that so much time has passed when, in retrospect, I probably should have had that back pain checked out when it first started flaring up again, even though I had seen those other doctors in the interim, but that was only after it had started getting out of control.

A week after seeing Dr. Thomas, on July 24, 2013, I saw Dr. Bones. He came into the room where Ariel and I waited after I changed into the obligatory paper gown, scowling as though he were already late for a golf game and had predetermined that I, being his last patient of the day, was going to be one of those difficult ones that would hold him up indefinitely. Right away I wanted to get to the point of my appointment and quell his misery as quickly as possible.

He put me through a similar battery of motor tests Dr. Thomas had done the week before; he pressing against my feet while I tried to kick out against his resistance, standing on one foot then the other, walking across the room carrying an egg on a teaspoon clenched between my teeth with my hands tied behind my back. Hmm, no, that’s a stunt on Beat The Clock.

Dr. Bones' Office

His report was the same that it was nothing I did, referring to that donkey press incident and my motor…whatevers….were fine. But, he ordered an Xray and off I went with his nurse to get some films done.

In the Xray he detected a slight curvature of my lower lumbar and noticed that the soft squishy stuff that cushions the vertebrae was gone from between 2 discs and they were rubbing together. He said the condition is known as DISH, Diffuse Idiopathic Skeletal Hyperostosis, basically a degenerative form of arthritis Okay, great, finally we had something to go on and maybe relief was on the way, whatever the outcome. Would I be able to work out again? Not that I’m as fanatic about it as I was in my younger days, but it’s my little escape during the day, or a good way to start the day, especially in the warmer months so my lunch time can be spent in my vegetable garden or just relaxing away from the computer for a few minutes in the sun.

He prescribed some muscle relaxers, some pain killers, some anti-inflammatories all of which I went through like candy. For one who is not so into taking medicines, at this point I welcomed anything that would help. He also suggested some physical therapy, located in the same building, for several weeks.

Dr. Bones also ordered an MRI which would take place at his office not far from my house 5 days later on July 29. I met with the MRI technician who told me what I needed to do and he assured me it would take no longer than 20 minutes. I told him I would try to hold out that long and remain as still as I possibly could because I could not lay down. I managed it and needed help to get into an upright position so I could make my way back to locker where my clothes were, changed and meet with Dr. Bones for the results.

His words meant nothing and doom to me all at the same time. Nothing because they were big important sounding medical terms and doom because it meant something was wrong. He said I suffered from spinal stenosis, which I later learned is a narrowing of the spinal canal. In terms of those three uncushioned vertebrae, he said he could fuse them, but that would give me limited mobility and he didn’t think I’d want that. Since the pain wasn’t affecting my legs, surgery seemed unnecessary. And there was also an undetermined protrusion of some sort jutting out toward my spinal column. He had no idea what it was.

He had to explain all this to me twice and then a third time after I got Ariel on speaker phone so he could repeat it one more time so at least he might better understand the unintelligible string of words being thrown at me meant.

That was a Monday. Tuesday, July 30, late morning, the phone rang. I saw Dr. Bones’ name flash on my caller ID. He spoke, I listened. He said he conferred with a colleague over the MRI and Xray results and some blah, blah, blah and then…… “I think you better get yourself an oncologist.”  Silence.

I knew the word. I’d heard it before, but what it had to with me I had no idea. And it was said so matter of factly. I finally spoke. “Are you talking cancer?” Again, matter of factly the reply was “Yeah.”.  And it was determined that I could continue taking the pills if I wanted, but the physical therapy was useless. “We’ll do everything we can for you.”  We’ll do everything we can for you? Was that his way of saying the end was coming?

“You better get yourself an oncologist”. Those words will stay with me for the rest of my life.

I’m not sure exactly what happened next, everything kind of went black, though I vaguely remember clumsily texting Ariel to call me.  The next thing I knew he was here and in between his call and his arrival home, I think I sat here at my desk, continuing to work, or maybe just shuffling papers around, trying to reconcile what had just happened. I’m pretty certain at some point that afternoon, some sense of clarity set in, at least on Ariel’s part, because obviously Dr. Thomas was called to find out what the next step should be.

The next few days, according to the calendar went by quickly. According to my mental state, time just stood still. The day after that fated phone call, I had a CT scan performed which determined the size and position of the tumor which was assumed to be Lymphoma. The conversion of the metric figures brought the size of it to around 9″ x 4″ and it was located behind my stomach and crushing my right kidney, which, as it turns out, explained the disfiguring swelling of my private parts. Two days after that, we (Ariel and I) met with Dr. Thomas seemingly in the wee hours of the morning, but it was more like around 8am and I had some blood work done and we discussed oncology care.We had already been searching for and found an oncologist that Ariel and I both liked and who was also recommended by our boss, who himself is a doctor, but this man was not available until October. His colleague could take me, but the questionnaire just to get in to see this guy seemed overly extravagant, but we needed an oncologist and here was this one.

Dr. Thomas said he’d work with whoever we wanted, but had a suggestion of his own. Dr. David. And he could see me much sooner than Dr. Questionnaire could. Dr. Thomas has been my doctor for years. He had never steered me wrong in anything so what was the harm in seeing Dr. David? My life was in the balance. We were to meet with him on Monday, August 5 and in the meantime, Dr. Thomas was having his nurse set up a biopsy as quickly as possible but that could not be until Monday, August 12.

He also asked me if I wanted to go on temporary disability but I emphatically declined. I had no idea what was coming down the pike and I am the first one to admit I have the propensity to make mountains out of mole hills and I didn’t want to have “free” time to sit and think. I was faced with a seemingly insurmountable mountain right from the start and who knew what was on the other side of it. I’m not sure where it came from, probably from corner of my mind that was still refusing to believe what was happening,  but at one point during the visit, I managed to croak at my doctor, “I lost 30 pounds…for this?!” Somehow we all chuckled, but he assured me that the weight loss would benefit me during my recovery.

Monday, August 5, we found ourselves in exam room 5 (5’s all around, my favorite number) with Dr. David and in a short time sent for Dr. Thomas to confer and together they decided it best to not wait until the 12 th for the biopsy but to admit me that day into the hospital and have the biopsy performed there. They needed to know for sure it was Lymphoma and to determine whether it was type B or type T, B being the “better” type to have in this case. It is more easily treated and cured.

Either way, both my doctors and the main guys at our job were all of the same mind, “We are going for a cure!”.

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Adding Insult To Injury

March 18, 2014

Our June date to go camping didn’t fare much better, but at least my appearance was not an issue for everyone this time around. Maybe I had started evening out or the initial shock of seeing the “new” me had worn off and that was good. The only thing that was a deterrent was the pesky pain in my back that wouldn’t allow me to get comfortable. But it’s camp, and that alone comes with its own set of discomforts but it’s something we look forward to all winter and we elected to grin and bear my discomfort. I wasn’t sleeping comfortably at home so what was the difference if we were out enjoying ourselves?

A few weeks later, as summer vacation during the 4th of July  was fast approaching and as if the debilitating pain in my back wasn’t enough, out of nowhere,  my left ear suddenly felt clogged, like I had gotten water in it and I couldn’t get it out. I tried an over the counter remedy and the grandfather of all cure all’s, hydrogen peroxide, but I still heard things as though I were under water. And I felt like my own speech was compromised because I couldn’t deal with sounding like I was yelling in my own ear.

Call the doctor’s office–this was beginning to be an annoyance. Suddenly I’m falling apart and becoming “that” guy that runs to the doctor for every little thing. Once again with Nurse Practitioner Aman who didn’t remember me from the back spasm appointment, (how’s that for reassuring?) but nonetheless I apologized to her for not getting back to her like she had asked to let her know how her dose of that sample pain killer had worked. Onto my new ailment. Did it have something to do with that back problem? Would I be going deaf?

I explained what was happening, dismissing the back issue for the time being and said I’d really like to try to clear it up before vacation, Dr. Aman prescribed a course of Prednisone to take care of it. 6 pills on day one, 5 the next, then 4 and so on and lo and behold, I was hearing like a champ during our time in Rehoboth Beach and best of all, which never really occurred to me until after we were home again, that I was able to sleep normally–in bed, laying down. Flat! So, whatever it was, had really been a temporary thing and the Prednisone had taken care of both my ailments.

angela  maduros boardwalk

But then reality set in when the Prednisone wore off a day or two after we got home and I was once again a curled up bawling mass of flesh on my living room floor, night after night with no relief in sight. Coincidentally, Ariel’s father, also on Lipitor for his cholesterol was having pains in his legs and with some research, we found that certain statins, such as Lipitor, can cause bone pain, and,…get this!…in the hip area. Bingo! That must be it.

Ariel had an appointment with Dr. Thomas on July 17 to review his recent blood work but decided it was more important that I see him so with a call to the office to switch appointments so I could get the ball rolling with my own doctor to get this back issue taken care of once and for all. Plus Ariel already had an idea of how his conversation would go with the doctor, that some of his test results were out of whack and they needed to be corrected.

After we spoke about how pleased he was at the amount of weight I’d lost thus far, we started discussing my back problem and I felt somewhat embarrassed that so much time had passed before seeing him, though I had seen those others. I told him about the zzzzapp sensation from months prior and how it passed and flared up again. I mentioned I’d just done a course of Prednisone for my ear and oddly he asked “How was your back when you were taking it?”  He did a battery of physical tests and assured me nothing was wrong structurally. We talked about stopping the Lipitor to see if the pain would decrease or go away and he agreed with those findings and told me to go off it for two weeks, give him a call and see how I was doing and if it was still an issue, he’d set me up with an orthopaedist.

Not even a week later, the pain had intensified so greatly to the point that more than once I proclaimed aloud that if I owned an gun I’d shoot myself. There was no relief in any way, shape or form and shooting myself would be the only way out.

I’m not sure if I can accurately describe the pain, but I will try. At first, with that initial zap during the calf exercise months prior, it was a warm stinging sensation and I could feel the tightness all up and down from my middle to my neck. As it progressed, when it began to reoccur on its own, I felt that same sensation. But as time went on the pain was centered more exclusively in my lower back, not shooting up to my neck. At first it felt kind of like the stressful pain you might feel in your upper back after lifting heavy bricks all day, but in your lower back. As it intensified over time, the sensations ranged from how I imagined it would feel if someone had shoved a dull knife in my back to being smashed by a sledge hammer and that initial feeling upon impact remained indefinitely. The more I would try to stretch it out, the worse it would feel and more often that I care to remember, I’d end up drooling uncontrollably like a rabid dog until the added stress from the stretching had subsided. I had mentioned this to Nurse Practitioner Aman and her response was a quizzical and uncomfortable blank stare.

There was no way I could wait the two week test period of being off the Lipitor and I called the office in tears and out of breath one morning asking to speak to the doctor, but he was away on vacation and I recounted  as calmly as I could the conversation between him and me a week prior and I said I could not last another week and one of the times I spoke about shooting myself was to the receptionist on the other end of the line. Apparently there was no record of this arrangement between Dr. Thomas and me and the nurse’s hands were tied, she could not help me without the doctor’s say so and thus could not  tell me what to do other than finding an orthopaedist would rest on my shoulders. I cursed the hell out of those nurses for being incapable and uncaring and went about finding Dr. Bones on my own.

By the time our July camp date arrived, it was useless for me to deal with trying to sleep on an air mattress as sleeping in my own bed was becoming a nightmarish chore and it’s next to impossible to stack pillows against the side of a tent so I could try to sleep that way and we ended up canceling our weekend.

Oh, My Aching Back!

March 11, 2014

I’m not exactly sure if it was November or December of 2012 when I felt a shooting electrical spark sizzle up from my waist area to my neck and shoulders when I was doing donkey presses, my scheduled workout for that particular day. Those are where you lie flat on a bench and pressing a bar full of ungodly amounts of weight with your legs and flex your feet upward, thus stretching out your calf muscles. I was up at 300 lbs. I was apparently misaligned on my bench and performed the lift incorrectly and…. zzzzapppp! For a couple of weeks I suffered this pain until it finally got to be bearable and ultimately passed and I could once again turn my head and walk across the room without grimacing or moaning. All in the name of fitness!

At the same time, I was under the watchful eye of a nutritionist, my new “best” friend, through whose guidance I would ultimately lose 30 lbs and 4 inches off my waist.  She put me on a carbohydrate counting regimen; 13 15g portions a day. That meant some calculating and label reading and food measuring.  The first pasta night since my “diet” was a hurdle because I can eat pasta with the best of them and here I was measuring out what my allowance was, which, believe it or not wasn’t too shabby a portion.  1/3 of a cup of pasta is considered a serving and because I can have 4 servings at dinner this worked out to 1-1/3 cups of pasta.  But, I’m getting off track. My back incident was at the beginning of my time with the nutritionisst and I remember mentioning to her during one appointment that except for this dull pain in my lower back, I otherwise felt great . What she could have done about it, I don’t know, but I went on record stating my ailment.

I continued to lose my weight and inches on into 2013, and seeing my nutritionist at six week intervals, and got into my size 34 waist jeans again. That was a glorious moment, harkening back to when I was busting out of 36’s. I even have a pair of size 38 waist slacks in my closet, but those were an extreme emergency and I just came across them the other day while I was looking for something else. 38?! Never again!

At some point, and I really don’t remember why or when it was but I couldn’t get in to see my regular doctor, Dr. Thomas. He’s impossible to see when you don’t have an appointment so I wound up with Dr. Vera. It might have been for the pain in my back having flared up again or maybe for something totally unrelated. It would have had to be for something important because I’m not a chronic doctor go to’er for every little thing. But given that I also have high blood pressure and my cholesterol is questionable and, as Dr. David, the oncologist, recently pointed out that I’m no spring chicken anymore, I am a little more conscientious about seeing my doctor. By the way, that spring chicken comment will play into the story later on as will my mysterious visit with Dr. Vera. Whatever the reason I needed to see a doctor on that particular day, she was dismissive toward me and made me feel as though I were taking up her time for some inconsequential  nonsense and sent me on my way.

Memorial Day Weekend had finally arrived and it was our first camping trip of the season. Man, no one will recognize me, I thought. I’m down 30 pounds, I don’t get winded like I used to just standing up so walking up the hills of the campground should be a breeze now. Life was good, except for that intermittent pain that was beginning to affect the way I slept. On a good night I could get into a comfortable position where it wouldn’t bother me and I was good to go. Yes, wait til they see me.

The general reception of the “new me” was less than I had anticipated. Friends tried to divine some ghastly secret, some illness I was keeping under wraps because I looked so gaunt. Well, it had been over 6 months since they’d seen the old chubbier me. Nothing I could say I think fully convinced anyone it was the weight loss and I had not yet, what? filled in? But then I was starting to question myself. Did I lose too much weight? Should I gain it all back so they’d stop staring and asking questions? Maybe it’s this pre-pubescent-like hair growth I was calling a beard that made me look even more frail? They let it go, but I knew the question was still there, wondering what I was keeping from them.  I shaved once we got home and… all better.

side by side

Given the time line of events as  I think back t0 my appointment with Dr. Vera, I’m sure it was for the pain because I also saw another doctor in the beginning of June of 2013 and this time I know it was for the pain. Again, not Dr. Thomas, but also not the dismissive Vera bitch, but Nurse Practitioner Aman. By this time, the pain had been steadily intensifying to the point where I could not sit comfortably in my recliner at night to watch TV. Some nights were fine but others, I just couldn’t get comfortable and little by little, night by night, as the pain increased, I’d try some back exercises I’d learned years ago when my sciatica got really bad. I had to explain over and over that I know what sciatica feels like. It’s a different type of debilitating pain. Nothing seemed to help. It was becoming a nightly occurrence, usually ending with me curled up on the floor in tears because I simply could not bear the pain.

I also could not lay down to sleep and for more nights than I care to remember, I’d be pacing back and forth waiting for the pain to subside and I began having to sleep sitting in bed propped up with pillows. It was the only way I could sleep with any shred of comfort.

I saw Nurse Practitioner Aman and explained my situation and she concluded it was back spasms. “Will they pass?” I asked. “I don’t know,” she replied. My faith in her waned. She gave me something to take and suggested getting something else over the counter but they did little to help and the suffering continued. This was not the last time I’d see Nurse Practitioner Aman,  but I would also finally get to see Dr. Thomas himself.

A New Beginning

March 4, 2014

This installment is dedicated to the memory of my friend, Sue Dillon, who lost her 15 year battle with breast cancer on February 13, 2014.

~~~~~~

October 7, 1960. That’s my birthday.

January 22, 2014. That’s my birthday. Well, more like a second birthday. A second birthday after a most harrowing period of my life.

On January 22, I was reborn after a confirming phone conversation with Dr. David, my oncologist, that my Lymphoma was in remission.

I know I cannot possibly compare my case to those who have, have had or will have  much more serious conditions than I, but it was my own personal Hell to go through, a hell which really kicked into high gear starting with that damned late morning phone call on Tuesday, July 30, 2013 (“You better find yourself an oncologist“) and which lasted until a few short weeks ago.

It is my objective, during the course of the following weeks of reliving my experience that it not only be a continued exercise in healing but to reach at least one person who may unfortunately need some encouragement. I don’t want to use the word closure because, first of all, I don’t like that word, but to paraphrase the words of my doctor “with cancer…you never know about these things”.

A lot of people called me brave for going through what I went through, but I don’t consider myself that way. I was just doing what I had to do to keep from dying, which, as you can imagine, that thought had taken a firm stance center stage in my mind. And the one thing I know for sure is that I never really asked the question, “Why me?”. I was too focused on getting better. I was determined that Ariel would not finish out our lives together without me.

That’s not to say that I didn’t have my moments when I wanted to give up, that I felt like the suffering wasn’t worth it and I just wanted to be left alone. Fortunately, those moments were few and far between. And I had Ariel, who wouldn’t let me give up, even though he afforded me the time to get through my bouts of anxiety in my own time.

But even during the darkest of days there were some bright ones. There was a light at the end of the tunnel, though that tunnel at times seemed to stretch itself beyond belief.

This was a new experience for me, for us, and all we had to go on was the doctors’ say so as to the course of treatment, what the side effects would be–a time line of events from point A to point B–but none of that mattered to me. To me it was all gibberish, how could the doctor possibly know what I was going through? Well, except for maybe one or two truly minor speed bumps along the way, their predictions were on the money and some things even surprised the doctors and nurses, in a good way.

As you read this, I am currently nursing two fresh bodily assaults: one from having my Chemo port finally removed this past Thursday and two, my new constant reminder that I made it through–my new “survivor” tattoo I had done on Friday.

port     tattoo

I half expected the port to be a monster looking thing with valves dangling all over the place like an octopus but it was just this simple affair. I asked them if I could keep it, as a memento, but for sanitary reasons they changed their minds at the last minute but allowed me to take a picture of it. And whether it’s the way the lights are hitting it or it’s actually printed on it, the number 5 is definitely on there, and that’s my favorite number.

The green ribbon on the tattoo, of course is for the Lymphoma and the flowers are from a family artifact; a card from a bouquet of flowers I assume was given by my great-grandfather, JL Sigley (remember him?) to Elsie, my great-grandmother. We just reworked the positioning of the flowers to fit my design.

I thought for a while how best to present this story and those of you who know me, know that when I tell a story.. I tell a story! The best way to fully experience anything is to either be there in the first place, or get as detailed a description as can possibly be painted.

This story may get graphic at times but it’s that harsh reality that will put the stamp on it that needs to be there. Cancer is a shitty thing, to be sure, but, and I’ve said this all along, I think this cancer may have saved my life.

In the next weekly installments,  I will take you back to the beginning and we’ll work our way to the present. Depending on how long this series runs, I may be interjecting some present day reports as they come up.

I feel like this might be like a page right out of Dragnet, but while the story is true, I will be using assumed names for my doctors, nurses and most other characters.