Treatments Start Tomorrow

It was 9:30 a.m. when Dr. “S” came in the room and told me he had the results of my CT Scans. I told him so did I and asked him if we could look at the film. I wanted to see what my cancer looked like. CT Scans are a type of x-ray (It’s like absorbing a years worth of the suns radiation). The machine takes pictures as if you were looking at a loaf of bread by cutting the loaf into slices. Each film is a slice of the body, so it’s like laying a slice of bread on the counter and looking at it to see the texture and holes etc. Dr “S” took out a couple of the films and showed me the enlarged areas of lymphoma.

The doctor sat down and explained to me that I was found to have significant enlarged lymph nodes in my neck and axilla (under arms). He told me that my cancer was treatable but it was not curable with currently available therapies. I didn’t ask about only living five more years because I did not want to hear that. I had done my research on Follicular non-Hodgkin's Lymphoma.  I had found that it is a cancer affecting b-lymphocytes. A b-cell is type of white blood cell that normally defends you against bacteria and other types of pathogens that cause illness. The b-cells reside in the  lymph nodes and when there are too many, the lymph nodes swell.

Dr “S” told me that I had a Stage II Lymphoma. I had enlarged lymph nodes in two separate areas, but both were above my diaphragm. Then he explained that my cancer was slow growing and that I had a couple of options. I could take a wait and see approach or we could start me on a regiment of chemotherapy. I thought to myself, wait and see? What kind of approach it that?,  but there are actually some patients who don't need treatment for years. Mine needed treatment. I told Dr ”S” that I would like to start with the chemotherapy.  Dr “S” agreed with me about starting the chemo and told me I would start the next day. He explained that I would take it right there in his office as he had a room called The Infusion Room. Many people receive their treatments at their oncologists’ office. You only  have to go to the Hospital if  it’s really bad. Some patients choose to receive their treatments at a Cancer Center, e.g. Moffitt Cancer Centers of Tampa. The advantage of the Cancer Center is that it is a place you would go if you need to have a specific treatment, such as a Bone Marrow transplant. But the chemo is the same at either place, so I get mine at my doctor's office where it's more personable. I asked him what he was going to give me? He said my treatment would consist of Cytoxan (you can tell it’s a poison just by the name), Vincristine and Prednisone.  I asked him how long would it take? He answered that a treatment takes about five hours. I would be getting a series of six treatments. I would receive a treatment every 3-4 weeks depending on my blood count. The chemo kills ALL fast growing cells and it just depends on how quick you recover.

That was it for today, he told me the front desk would schedule me for the morning and he would see me tomorrow. I said goodbye to him and I stopped in the Infusion Room on the way out. There were several people all sitting in recliner chairs covered in blanket to stay warm and they were all hooked up to IV units. There was a TV on but most looked to be asleep. I introduce myself to the head nurse and said I would see her tomorrow. I went to the front desk and they gave me a little business type card with my appointment time on it. They wrote on it that I should be there at 8:45 a.m. I told them thanks and I would see them tomorrow. I left the building, got in my car and drove to work.

Treatments start next time

CT Scan Results

Two days after my first C T Scans, I was on my way to see my oncologist. I wanted to have my films for my personal records and I wanted to read the report before I arrived at my appointment. I stopped by the Hospital to pick up my films (the cat scans) and a copy of the report that they had faxed to Dr. “S”. They gave me my films and reports and I walked back to the parking lot. I unlocked my car door, placed the films on  the back seat,  got in and closed the door. Now it was time to open the envelope and read the report.

The first page was for CT SCAN - HEAD/NECK. The report read as follows: There were numerous enlarged lymph nodes consistent with a history of Lymphoma. The Impression was: Extensive Lymphadenopathy within the anterior and posterior triangles consistent with history of lymphoma.  In non-professional (layman) terms , I had enlarged lymph nodes all around my neck.

The second page was for CT THORAX – LUNGS The Impression was: Normal  CT of chest. Heart was within normal limits in size and shape and  lungs were clear. There were a few small lymph nodes within the axilla (under arm)
.
The Third page was for CT RETRO CONTRAST ONLY (remember that nasty Barium I had to drink) The Impression was:  liver, spleen and pancreas were normal.

It seemed the lymphoma was only in my neck and maybe a little in my under arms. I knew it was in my neck because the tonsil, I still have my tonsils, under my right chin was very swollen. I was to find out later that my adenoids in my sinuses (part of the lymphatic system) were also swollen, which caused me to snore. My snoring would stop after treatments. Well there I was by myself in my car. I was relieved as I thought, not too bad, I was really a lucky person. It could have been much worse, maybe I could out live the crummy five years they gave me. I started to gain my mental power and will, I knew I would beat those odds.

I laid the report on the passenger’s seat and I started my car and drove to the doctor’s office. His office was fairly close to the hospital so it was a quick trip. I parked, went inside, paid the co-pay (always have to pay the co-pay) and waited in the waiting room. I was less anxious this time, I had read the report  and there was no reason to ask how long I was going to live, I had already heard that answer. So it was time to put my game face on, I was ready to do whatever was necessary. They called my name and I went back to see Dr. “S”.

He came in wearing his nice white jacket. That story next time…...

The CT Scans

My Oncologists office set up my scans at the Hospital. I had good insurance at the time. I was self employed so I paid through the nose for it, but now it was paying off. It’s a sad commentary on our society, but it’s true. Life is better if you have money; you can look better, live better and be healthier. Maybe not happier, but healthier for sure. In the words of The Climax Blues Band…rich man wins, poor man pays

I called the hospital to adjust the time. I rescheduled my appointment for early in the morning on December 3^rd 1997.  I did this because you cannot eat or drink for the 12 hours before the tests and then you have to wait to eat until after the tests are complete. I had never taken these types of tests before but I knew that I needed to eat at a reasonable hour in the morning or at least by lunch. I eat breakfast every day.

I arrived at the Hospital, per their instructions; a couple hours before the test were to take place. I had to register, and then I just sat and waited for a while. It wasn’t too long and they called my name, I got up and walked over to the nurse who was waiting. I thought I was going back into the testing area. Wrong…she gave me these gigantic plastic containers of this white milky liquid. I asked her, what is this stuff? She told me it was called Barium and that it would create the contrast in the pictures that they would be taking. I had to sit and drink this stuff first before the tests. I had no idea that this milky liquid tasted so terrible, I wanted to gag, I wanted to throw up. I learned later on that I was drinking a metallic alkaline earth metal. It was awful and it just wasn’t a little bit of it, but two BIG containers of it. I finally managed to drink both of the bottles and was so relieved. I waited a while longer and they called my name again, this time to go back and start testing. I think the nurses like their jobs, because they really enjoyed the look on my face when they pulled out another bottle of Barium for me to drink. Here Steve, you have to drink another round right now before we test. They snickered at each other, ha ha ha ha ha ha. It wasn’t very funny to me!

I was escorted into this freezing room full of big computerized tube like machines and tables. I had to disrobe and put on that funky robe they give you. OK now I was ready (ready to puke that is). I had to lie down on my back on the very narrow table. It was like a conveyor belt so they could move me in and out of the doughnut looking machine. It was the scanner. Anybody claustrophobic? They were ready to start testing. The table started to move into the tube. I was slowing  being inserted into the doughnut hole. Now the CT machine started making a whirling noise. The table stopped and they gave me instructions over the speaker, Hold your breath and do not move. The CT machine started making a high pitch spinning noise. I thought I was in the Time Machine. I was lying there perfectly still holding my breath. Then over the speakers I heard Breath. They repeated this testing as the CT machine  slowly inched its way down my body towards my pelvis. It took about 25 minutes.

Now the nurse came out of the booth and brought over the IV apparatus. She explained that now they had to inject a special dye into my system as the doctor ordered CT Scans with and with out contrast. Turns out the Barium was just for my GI tract and this dye was for my neck, chest, groin etc. The nurse proceeded to insert a needle into a vein in my arm and then she started the drip. I  told her that my arm was warm and I was also feeling a little warmth in my chest. She explained there maybe some side effects. I asked her, what kind of side effects? She told me things like, Mild to life-threatening allergic reaction, Flushing/redness and hives, Shortness of breath, Nausea, vomiting, Blood clots and Dizziness. I was supposed to let her know if any of these  got really bad so they could treat me if necessary. As it turned out  I only felt a warm feeling come over me,  I also had mild tightening in my chest and it was a little difficult to breath. I was able to  deal with those side effects, so they repeated all the test again,  from head to groin. Then I heard the voice coming from the speaker, Thank you, all tests are complete.

Thank goodness we were finished. It wasn't that bad though, except drinking that awful Barium. I rose up off the table, went into my cubicle and dressed. I chatted a bit with the nurse and I left. Man I was hungry.

See you next time.

My Oncologist -The First Visit

I made it through the Thanksgiving Holiday and now Monday had finally arrived.

I drove to my new Oncologists' office to see Doctor “S”. I wasn’t sure what to expect as I pulled into the parking lot. I parked and went inside. I walked up to the check in window, I signed in and paid my co-pay. I was sitting there in the waiting room filling out the insurance paper work and the questionnaire. You know, the one with the questions like has anybody in your family ever been sick. About fifteen minutes passed and then the nurse opened the door to the waiting room and called my name “Steve Johnson”. I got up and walked to the door and she directed me down the hallway to one of the suites. I entered the room and sat down in a chair, and then the nurse said, “the Dr. will be with you in a bit”. She left the room, closed the door and there I sat in this suite waiting for my new doctor. I picked up one of the magazines and started to flip through the pages to occupy my time as I waited. Five minutes passed, and then ten minutes, then my new doctor came in. His name was Dr. “S”.

Dr. “S” greeted me as I moved to the examination table, the one with the crisp white paper that crunches when you sit on it. He was reviewing my folder, reading the biopsy report and looking over my questionnaire. I just sat there watching him, I was wondering, did he even read my biopsy prior to seeing me or was he doing this examination on the fly?  I asked him, "how did I get cancer in my Lymph Nodes"? He said, “we don’t know how it happens”. He lowered the back on the examination table and as I sat on the front edge of it, he started to examine me. He put his fingers on the sides of my neck and started to feel up and down, then he moved his fingers under my chin. He didn’t tell me what he was doing, but I already knew he was trying to determine how many lymph nodes he could feel. Then I had to take off my shirt and he felt in my under arms, again feeling for enlarged lymph nodes. He asked me to lay back and then he pushed down on my stomach area trying to see if my spleen was enlarged. Finally, he felt around my groin, again searching for enlarged lymph nodes. Then he said, “you can put your shirt back on”.

My new doctor did not have a lot of personality. He didn’t really seem to want to offer up any information. It was like he wanted to keep me as the mushroom who lives in the dark. It probably made his job easier if he didn't have to answer allot of questions. I asked him “what do you think”? He just replied that he was going to send me for CT scans. I asked him again “did I have a lot of enlarged lymph nodes and what about my spleen”?  He replied that my spleen seemed OK and that I had a few enlarged lymph nodes in my neck and in my under arms. Remember all we had at this point was a biopsy that said one lymph node had cancer in it. I asked him the same question that was burning a hole in my brain “How long do you think that I going to live” He was uncomfortable with this question and was reluctant to answer. He could not avoid me starring at him waiting for the answer. He rather mumbled “5 years”. This time it wasn’t a shock, but it was deflating. Getting information out of this guy was not easy, I was thinking I should get a different doctor, but my primary had recommended this guy so I figured I would give him a chance.

He wrote a prescription for me to get a CT Scan (more on that later). He handed it to me and said he would see me again in two weeks after he received the results. I asked him “why am I getting a CT Scan?  He actually explained that they determine Lymphoma by the size of the lymph nodes and they will be able to see that with the CT Scan. This was all new to me, so I thanked him for his answer and that was it, the office visit was over. I went to the front desk and they said they would set up the CT Scan for me and that the Imagining Center would call me with the instructions for the Scan.

So that was it for, My Oncologist -The First Visit. I had waited for what seemed like an eternity to see this doctor. It came down to him reading my file, doing a physical examination, feeling my lymph nodes, telling me he didn’t know how I got cancer, telling me I had five years to live and then sending me off to get a CT Scan. I must say It did not lift my spirits, but I was determined to be positive about my future anyway. Now all I can do is tell everyone that you have to be pro active with your on health care. Allot of doctors just do not tell you that much and at some point you may have to find a new doctor. Nevertheless, for now, I was going to try this one.

More to come next time…

The Waiting

This was still the first day as I had just arrived home from my diagnosis and the library. There I was sitting in my chair stewing in my self-pity, Woe is me!  Before I sank too deep, I started to tell myself that I had to snap out of this funk that I was sliding into. I am mostly a positive person. I wake up happy (ok, I know that makes some of ya'll just sick) but it's true. I am blessed with a happy disposition. On the other hand, we can all be negative to some extent, some more then others. I thought about the pros and cons of my life. I wasn't dead, so there was no use acting as if I'm dying. I started to think that I should do every thing I could, to live longer then those lousy five years Dr. M gave me. The first step was to find the inner strength to believe and to have the faith that I was going to live longer than five years.

OK, now things were a bit better. Not a lot, just a bit, I mean the Dr. just told me I had cancer. I did manage to pull it together enough to think about the phone calls I had to make. What should I say, how should I break it to them. I prefer to be as direct about things as possible, but in a tactful manor. I would be delicate, but I would have to tell it to them the truth. I picked up the phone and made the first call to my parents. They didn't flip out or anything, but I could tell in their voices that they were very worried. Next, I had to call my brother and stepbrother, and then I called my girl friend and her parents. My family and girl friend had allot of questions for me. I had friends to call, but it was late and I knew they would be asking all kinds of questions too. I decided I would call them another day when I had more information. Wow, it had been a very long day and it was finally time to go to bed.

One of the most difficult things about cancer is how hard it is on the people around you. The ones who love you, the ones who like you and the people you associate with. Cancer is one of the words that strikes fear into the heart. The next morning I had to face my own fear. This was not a time to procrastinate. It was time for me to Take Control Of The Hand Of Fate. It was time for me to call this Oncologist. (They are actually Dr's of Hematology Oncology. It's the diagnosis, treatment and prevention of blood diseases). I called the number to set an appointment. I was surprised as they set my appointment for the Monday after Thanksgiving. Success, I had my appointment to see Doctor "S".

Now came a new phase of difficulty. The Waiting.  I would have to wait like 5-6 days to see my new Oncologist. I would have to celebrate the holiday with a heavy weight on my mind. I would have to pretend that everything was ok. I would have to keep smiling. Just llike the Happy/Sad masks are the symbols of Comedy and Tragedy. That was my life at that moment. The fact is though, we are what we think.  I just kept telling my self, I was well, normal, healthy, happy and so on. I started to believe.

The Waiting was difficult. Even though people surrounded me, I was still in my own little world. I struggled with believing in my positive self-image, but I was not going to let this cancer take control of me. It was not me. It was something separate. I was this great guy everybody liked, friendly, life of the party, etc, An extrovert, at least in public. I had to compartmentalize this cancer. It was now part of my life, but it was not going to define my life. I had a giant mountain to climb. I could either give up and lose, or I could die trying. I made the decision to be a warrior and accept the challenge. It was on!!!

Finally, Monday arrived and it was time to go see Dr."S".

That story next time......

5 Years, Woe Is Me

All right, so I just left Doctor M's office. I'm in my car driving home. I was single at this time, which meant I didn't have to tell anyone yet. Certain people knew I was at Dr.M's going over my diagnosis, but I figured I would try to get some information first. So let's see... it's 1997, my home computer was an Apple II C, yeah OK, so it was a dinosaur. Heck, I had just started using a cell phone. I never had one of those big cell phones for your car that came in a suitcase. There was no home internet, (not that I was aware of). I went to the Library to find out more information about my Lymphoma.

You know, it's not as if Lymphoma was an everyday word. I started to do research on the subject. I found information on the lymph system, what it did and where the lymph nodes were located. I also found information of the different types of Lymphoma, (e.g.) Hodgkin’s Lymphoma, Non Hodgkin’s Lymphoma, what was Lymphoma vs. Leukemia, etc. Why did I get cancer of my lymph nodes? I kept reading.

The underlying reason I was doing this research, was that I wanted to find information on what the survival rates were. I was a little depressed and reading all the information wasn't really helping. WHAT I REALLY WANTED TO FIND OUT WAS, what were my chances and how long was I going to live. 

Well I burned out on that pretty quick, so I just decided to go home. It had been a long day and I still had phones calls to make. I made some copies at the Library and when I got home, I read the information repeatedly. Desperately I kept reading and re-reading, reading and re-reading. Just looking and hoping to find the words that would say: the cancer you have can be cured and you will live a long life, I never found those words. I was feeling sorry for myself, I was starting to get depressed. 

As I sat there all kinds of thought were racing through my mind. How long had I had this Lymphoma, where was it located and how bad was it. Now I know that Dr. M said that the cancer cells were not in my blood and the biopsy showed it was only in the lymph node, but he was just my primary Doctor. After reading up on the Lymph System I wondered how many of my lymph nodes had this killer CANCER.  Should I go get a second or third opinion? My mind was starting to overload, I mean Doctor M had just told me I only had 5 years left. (Reflecting back on it now, that is much better then when someone is told to go home and get there things in order, because they only have a few months to live). I wasn't thinking about that at the time. I stared to think negatively. What’s the point anymore? Nothing really mattered at this point.

I am not a person that would take his own life. My will to live is way to strong. I had always been positive, a winner. I was smart, school came easy for me. I played all sports (Now that I'm writing this blog and putting some pieces back together, I got mono when I was still 15 and had it when I turned 16). After I recovered from Mono, I started to work. I was the kind of person who took charge. I could never just give up.

Nevertheless...this news, this GIGANTIC WORD, CANCER, it hit me like a shovel right in my face. I couldn’t stop thinking... 5 years, I'm only 44, I started to regret my life and that I had not accomplished anything. I should have stayed in Radio. I should have done this, I should have done that. I was a nobody, I never became important. I was all alone in this world. The depression and self-pity worsened. I thought to myself... my life had been a failure, now I'm out of time. Then with a heavy heart, I sunk deeper into my chair..........Woe Is Me.

stay tuned more to come next time!

The Diagnosis

Looking back on it now, I guess I wasn't really paying too much attention, I knew I had felt a little tired for a while. I was dragging and would lie down on the bed and rest allot. I would get winded just walking up the stairs. With the type of cancer I have sometimes there may not be many symptoms, at least at the beginning. Then again there could be, things like; fever, itching, night sweats, weight lose and swollen glands, etc.). Lucky I was only tired, I didn't really notice the swollen gland in my neck. Besides, you know us men; we're not as in touch with our bodies as much as you ladies are. To be honest with you, it was my girl friend who commented on how tired I was.

It had been about 3 weeks since the biopsy. I was going back to the Doctors office (I will refer to him as Doctor “M”) every couple of days so the nurse could change my dressing. I was just trying to get my neck healed up. They never said anything was wrong so I figured I was in the clear. Then one day I received the call I mentioned in my previous blog, the call to come in for an office visit, to go over the results of the biopsy.

I arrived at Doctor “M”s office in late November 1997 a few days before Thanksgiving. I was a little pensive and allot anxious, thinking they would not make me come here if it was good news. There I was, sitting and wondering what he was going to tell me. I was waiting in the room for  Doctor “M” ,my Doctor was the definition of SLOW, and the waiting seemed to take forever. Then finally the door opened and in came Doctor “M”. He sat down and opened up his folder. He turned to me and said, "Steve, we got you biopsy back, it came back as malignant and it's Lymphoma, the good part it is not in your blood yet and it is contained inside the lymph node".  I just kind of noded ok with my head, and then I asked him "what the heck is Lymphoma?"  Doctor "M" said, "It's cancer of your blood Steve". I asked him "How the Hell did I get that?" We went on talking for a while and the bottom line is they didn't know then, and really don't know now what causes it. In the last 15 years I have done allot of research and I have my own ideas on how I think I got it. (that’s another discussion)

We had a lengthy conversation (I guess that’s why he was so slow) about the type of Cleaved Small Cell Diffuse Follicular Lymphoma that I had. Of course, I asked him all the super important questions that anyone would ask, right, "How long am I going to live?"  He explained the Lymphoma I had was the type that was considered a slow growing chronic type, that was the good news, the bad news was that there was no cure and it's 100% fatal (ooh boy).  Doctor “M” said "Well Steve, you should live a good 5 years". Whoopee!  Yikes, I was only 44, I wasn't even going to live long enough to make it to be 50 years old. Then he gave me the name of an Oncologist I should go see. I told him thanks, I mean what else are you going to say, and I left. 

I was in my car driving home and it took a while for it to sink in. I was thingking; how do I tell my family, my girlfriend, and my friends that I had cancer and only had 5 years to live. I started to get depressed.

More of this story in my next blog.............Steve

The Biopsy

 It may have all started back when I was 16, no confirmed links but who knows... At 16 years old, I had to get a physical for Basketball, but instead I was diagnosed with Mononucleosis, yeah-good ole Mono. They told me "Your white blood count is sky high, so you either have Leukemia or Mono, we'll let you know". I was like, yeah OK thanks. Thank goodness, it turned out to only be Mono.

Jump forward 28 years to November of 1997. I had been going to the Doctor for awhile with sinus issues (a normal problem in Florida). You know how the Doctor will  feel your neck to see if your lymph nodes are swollen, and  after he felt mine he suggested to me I should have one of my lymph nodes checked out. (When you're sick your lymph nodes will become enlarged, but when it's something else they feel a different way, like hard lumps). Anyway, that meant...lets do a biopsy on one. First, I had blood work done and it was normal and that was good. Then came the lets do a biopsy part. He scheduled me to come to his office after hours so he could slice me up with out any interruptions.

My girl friend came with me for moral support. "OK son, lay back this won't hurt a bit". He proceeded to cut a hole in my neck so he could extract a lymph node. It really wasn't that bad, you know they give you some Novocain shots around the incision area so it wont hurt. However, I guess he forgot I was taking some prescription anti inflammatory at the time and they thin your blood. So needless to say, I was bleeding profusely and he could not stop it. He propped himself against the wall so he could apply pressure to the incision to stop it from bleeding. In the mean time, my girlfriend was out in the waiting room. When the bleeding was finally semi under control, he went out to bring her in so she could see that I was OK. Big Mistake! When she saw me, she screamed, as I was a little bloody, and she nearly fainted. Then he had to escort her back to the waiting room.

Now back to the hole in my neck...Because it was a mess he could not stitch it up and the only solution was to jam a wad of cotton in it and bandage it up. I was eventually able to go home that night, but had to go back to the Doctors office to have the dressing changed every couple of days. I waited about three weeks thinking everything was all right, no news is good news, right. Wrong, just before Thanksgiving I received a phone call from my Doctors office, "Steve we would like for you to come in so we can discuss the biopsy results with you". I asked "can't you just tell me over the phone". They said the usual; "no, you must come see the Doctor".  In my next blog... the news you can't use.