My New Doctor

My New Doctor

First a quick recap of my life with chemo. Between the years of 1997 and 2012, I have had; 1 Bone scan, 2 Biopsies, 6 PET Scans, 9 CT Scans , and as of August 14^th, 40 Rituxan Treatments and 60 Chemo Treatments. That totals 100 treatments.

Now, back to the story…The year is 2000, I left Dr. S. and found a new Doctor. His name is Dr. A. and he is one of the best doctors in  Tampa, also he is very cool and is on top of his game. I had my first office visit with Dr. A. and we decided to start with a new technology called a PET Scan (Positron emission tomography). My previous doctor would not order a PET Scan, but my new doctor did.

A PET Scan is a type of imaging where you are injected with a sugar solution/tracer of radiation. Then you have to sit motionless for about an hour, usually in a freezing cold room. During this time, the body absorbs the solution. The tumors absorb it even faster because the tumors like sugar. While one is, being scanned the radioactive solution gives off Gamma rays. The result is that the tumors show up as bright reddish spots on the resulting film because they have absorbed all the radioactive sugar solution. With this method, the doctors can tell if you have active cancer from the bright spots on the film. Between 2000 and 2007, I had six PET Scans. Eventually Dr. A. told me that there was no need to do them because my cancer grows slow. For my tumors to show up on the PET Scan they would have  to be dangerously big and would have progressed too far. The lymph nodes should normally be the size of a bean and mine have been as big as D-Cell batteries, but no need for the PET Scan, for now. Dr. A. was innovative and aware of new treatments and my previous Dr. was not.

Dr. A. also explained to me the reason I had to take two different types of chemo with my old doctor. He told me based  on the notes, that I had been under dosed for 6 months, then my old doctor had to give me a different type of chemo that unfortunately kills Stem Cells. Therefore, I would not be taking the Fludura any more, as I may need my Stem Cells some day. I agreed no more Fludara because I like my Stem Cells.

At this point my Follicular Lymphoma was slowly coming back, that's what it does. My cancer is chronic and there was no cure (and there still is no cure at this time). That meant I would ride it out for as long as possible before having to start chemo again. It is best to try to take chemo as little as possible because it could cause a  transformtion into a worse type of cancer. The Evolution of an indolent non-Hodgkin lymphoma (NHL) to an aggressive histology is known as histologic transformation (HT). The statistics are that every year the chance of transformation goes up 3%.

We decided that I would come back in three months then we could maybe wait 6 months before another visit.

Next Time… More Treatments.

THE BIG MAYBE

I was ready to get back to living my life without having to take chemo treatments. My Life was great. My food started to taste normal again, my energy returned, certain smells no longer made me want to vomit, I stopped feeling sick all the time and  I started to regain my coordination. Although, I still had painful headaches everyday.  The BIG MAYBE was… how long would my Remission last?

I went to see my primary doctor to find out why I was having headaches every day. I told him I tried the over the counter medications but they didn't work, Excedrin Migraine, Caffeine, Tylenol, and Ibuprofen, nothing worked. After examination, I was diagnosed as having tension headaches that would change into migraines. He prescribed a medication that would help me deal with these painful headaches. It would not prevent them and I would lose up to four hours per day dealing with them. Just another side effect from the treatments that would last for a dozen years.

I received my first post treatment CT Scan three months after I finished treatments. For the time being, I was only going to have Scans of the chest and neck because there were no enlarged lymph nodes in my groin area. I went to get my CT Scans on February 3 1999. The results were as follows:

IMPRESSION: Mild cervical lymphadenopathy in patient, with lymph nodes measuring less then 1.5 cm in size within both posterior and anterior triangles. The appearance is not significantly changed since 10-30 -98.

That was good news. I went to see my Dr. for a follow up visit and his assessment was that I was doing well and at present was asymptomatic. From the beginning, I was not sold on this doctor. As a patient, I was educating myself about my disease and the treatments available both medical and homeopathic. My doctor was not really on the program. I would ask him questions and it was as if I knew more then he did. He was also reluctant to recommend anything different. He said the insurance companies didn't like it. He did not provide the answers I wanted to hear.

I stayed with this doctor for three more CT SCANS until April 2000. The RESULTS of these scans were:

8-09-1999 No significant change. 

04-13-2000  Hypodense mass in the spleen on CT Scan of retroperitoneum. (anatomical space in the abdominal cavity)  We thought it was a growth in my spleen, but it just turned out to be a shadow or possibly scar tissue. My luck continued.

03-31-2000  Level III, IV, and V cervical adenopathy (swollen/enlarged lymph nodes) There has been a slight progression of the disease since the previous August 1999 study particularly in the posterior triangles.

Damn, my Lymphoma was slow coming back and it had only been 1½ years. Lucky it was a slow growing cancer and I was hoping I would be able to extend my time between treatments. I had already decided to find a new oncologist but I went ahead to go see my doctor for my follow up visit. After consultation, we agreed to take the wait and see approach.

Until Next Time ...when I meet my new doctor.

REMISSION

I have reviewed my records and I found some CT Scans from July 30th 1998 that were done during the mid point of my Fludara treatments. I had received enough chemo to kill an Elephant (36 treatments) and enough radiation to give a person a permanent glow (or some other type of cancer). One CT Scan in 1997 and three more Scans in 1998.

After three cycles of Fludara I was sent to get CT Scans. The results of my July Scan were, Cervical adenpathy (enlargement of lymph nodes) has improved significantly since previous study done 5-6 98. Finally, good news, but I still had three more rounds of “The Juice”. I took those three cycles of treatments and on October 30^th 1998 I went to get another CT Scan. It had been almost one year since my diagnosis.

Two days later, I drove to the Hospital and picked up my film and the hard copy of the results. As usual, I walked back to my car, got in and opened the envelope so I could read the results. I was confident that it would be good news based on the July report. The result of the report dated 10-30-98 read, Mild cervical lymphadenopathy, further reduced in sizes relative to 7/30/98 examination.

Lymphadenopathy is a medical term, which means disease of the lymph nodes, and or swollen or enlarged lymph nodes, chronic, abnormal enlargement. I only had a few mildly prominent nodes and only one larger then 1cm (1.2cm). Remember, normal lymph nodes are less then one centimeter in size.

The treatments finally worked. I was now driving to my doctor’s office. I arrived and went in to meet with Dr S. He reviewed the report and then he told me that I was in REMISSION. Praise the Lord I was a blessed man. Suffering through a year of torture had paid off. He told me I would now get CT Scans every three months for a while, and then every 6 months, then once a year and then time would tell. I was scheduled for a CT Scan and office visit for February of 1999.

I left his office with a happiness I had not known for a long time. I did not worry that I was pasty white and sickly looking, or that my walking felt spastic because of my treatments, or that I was getting headaches everyday. None of that mattered, I was on cloud nine. I was in REMISSION and CANCER FREE (kind of). When they say remission, what they mean is that they can not detect the cancer. None the less, It was time to celebrate life!!!!!!

Next time… Treating The Headaches

Round II Complete

A quick re-cap of my journey so far….

I was diagnosed with chronic, no cure, Follicular Lymphoma in November 1997, when I was 44 years old. Fortunately, having been an athlete all my life, I was in great condition, which helps in the battle against cancer. Over five months I received six cycles of the standard chemotherapy. The treatment consisted of Cytoxan,  Vincristine, Prednisone plus a few other drugs. The treatments did not work. It was now summer of 1998 and I was receiving a Leukemia chemotherapy. The drug was called Fludara and I was receiving it five days a week. When I finished, I would have received thirty treatments over a five-month period. That would be thirty-six total treatments over 12 months for both chemos. That’s being stuck with a lot of needles. Needles for blood samples, needles for mistakes, and needles for the treatment. I started to dream of needles.  

Back to the story………….

I finished the first week of treatments, recovered for two weeks, had my blood checked and then it was time for another round. I took the second round, five days of the Juice and suffered excruciating, painful headaches for the whole week. That was on top of the usual sides effects, which I have previously described.  I would take my Juice and go to work and act like everything was ok. I went on sales appointments and handled business with my clients without them knowing I was sick. The main problem were the headaches, my head would pound with pain.

I finished the second round of Fludara and recovered for 2 weeks. Then I took the third round of Juice. I recovered again and then I was ready for my fourth, fifth, and final sixth cycles of the Fludara Juice. I finished the last treatment and I recovered for two weeks. I went to see my doctor and he scheduled me for another round of CAT Scans. There was some good news this time, as I did not have to get a lower GI Scan. That was a relief because it meant I did not have to drink the terrible tasting Barium. There is always a bright side to everything.

It was my third time taking these CT Scans. I have read information that shows the radiation received from a scan is equal to a years worth of sunshine. Unfortunately, you do not get a tan. I went to the hospital and received my scans. I would go back in a couple of days to pick up my film and the reports. I would also be going to visit my doctor to go over the results.

Next time…The Results.

Fludara-Week One

It was Wednesday and time for my third treatment of the week. I went to the doctor’s office and received my “Juice”. I was becoming a pro at this treatment routine. I would take the treatment in the morning, go to my office and work the afternoon, then I would go home and make my other Juice. My all-natural vegetable juice, then eat a little, go to bed so I could do it again the next day.

I repeated my treatments on Thursday and Friday. I still had a giant purple bruise on the top of my right hand.  I had been suffering from a headache since I finished my first treatment on Monday. I was walking around, going to appointments and living my life with a pounding pain in my head. I was mostly on the right side and trying to think was like being in a daze.  I had the headache, heartburn, constipation, smell and taste issues, restless leg and lack of coordination side effects. Not bad, it could have been worse. I still had my hair so nobody knew I was sick and taking chemo, and I did not tell anyone either. That’s very important when you are in sales, because part of the sale is based on appearance. I was still  looking fit, a little pale, but good none the less.

I completed one week of my new treatment and now had 2 weeks to recover. The side effects did not seem as bad, maybe I was just getting used to them? The main side effect was the painful headache. This headache lasted for seven to ten days. Eventually it went away. Another week had passed and I went to my doctor to have my blood checked. The same routine as my previous chemo, the doctor wanted to see if my blood counts had recovered enough to receive my next series of treatments.  My CBC’s (complete blood count) was OK. My red count was good and my white count was just enough to start treatment again in one week.

I felt good my third week, well, good is relative. I felt semi normal and enjoyed the feeling. There are things that I have found out later about the Fludara that I was receiving that were not that good for my body. Then again, Chemo is bad for the body as it causes organ damage to ones heart, kidneys, liver, lungs, veins and more.  However, it also can prolong ones life and that is great as long as you can have good quality to your life. I was determined to keep my life as normal as possible and to enjoy every second of it. We are all going to die, we just don’t know when. When you know your time is going to be up soon, you look at things differently. The sun is brighter, the sky is bluer and you realize how great it is to be alive.

In a couple of days, it was time for another round of The Fludara “Juice”………… a week sure goes by fast. 

Five Days A Week

As the sun rose Tuesday morning, I rolled over in bed; it was time to go take another round of “Fludara Juice”. I still had a faint headache, it wasn’t that bad, but my hand was still throbbing.  I got up and went though my morning routine, then I drove to my doctors office. It was a little before 9am when I arrived, I went inside, paid my co-pay, and went back to the infusion room. I was becoming an expert at this treatment routine. I found my chair, arranged my personal belongings, sat down and waited for the nurse.

The head nurse came over and I showed her the giant purple bruise on the top of my hand. I told her I did not want the new nurse to stick me today. She said she would get me started herself, I was relieved, I didn’t need another bulging bruise. The head nurse rolled over her cart. This time she was able to insert the needle in my other hand on the first try. She flushed out the IV and hooked me up to my bags. I watched the Juice drip, drip, drip. Like Monday, the treatment did not take too long. I was finished in a couple of hours.

I packed up my things, told the nurses I would see them tomorrow (Wednesday) and I left. I drove to the office as I had work to do. So far the side effects had not been too bad (I still had three more treatments to go for the week), but there was one little side effect that was bothering me. I was developing a strong headache. I tried taking Tylenol on Monday, so today I decided to try Advil. Neither one of them worked. I continued to do my work at the office as the headache only worsened. Finally, I could not take it any more so I left and drove home. When I got home, I called the doctors office. I spoke to the head nurse about my headache. Her advice to me was to drink a can of Coke and take two Excedrin. I drove to the store, bought the Coke and Excedrin, and drove home. I followed her directions and then lay down. After about an hour I still had the headache. It wasn’t like it was any better, in fact, it was worse. I was also starting to develop the dreaded…. constipation. The chemo was going to make my life painful for several days.

In an effort to help my body, I had been juicing every day for the past six months. I had my favorite recipe. I would juice, carrots, apples, celery, spinach, and the stalk of broccoli (sometime I would throw in cucumbers or beets). I would make it fresh and then freeze a bag for later or for days when I did not have the energy to make it. If you want to get your vitamins and nutrition then you need to juice. I also had done a lot of research and was taking a long list of supplements. The juicing and supplements helped me to survive.

Well it was time to go to bed; I had another treatment on Wednesday.  

Fludara Juice

Monday arrived, I got up early, made a lunch and left the house and drove to my oncologists office. I checked in at the front desk and walked back to the infusion room. I found a chair and placed my belongings next to it. I was ready for more treatments with a different type of chemo. This time it would be a little different. I would receive these treatments for 5 days, everyday of the week.

I sat down and waited for the nurse to come over. This time it was a new nurse, and she came over to get me “hooked up”. She rolled over her cart and sat next to my chair. She tied the tourniquet around my arm and proceeded to try to tread a needle into a vein in the top of my hand. I had a bad feeling about this IV, it did not seem like it was in my vein. I tried to tell the nurse that it was not in my vein, she ignored me and went ahead and pushed a syringe full of saline solution into my vein. Immediately the skin on the top of my hand started to bulge and the nurse stopped injecting the saline solution. I told her I told you it wasn’t in the vein. She said sorry. Now my hand had a huge lump on it and it hurt like hell. The needle was not in the vein and all the solution had gone under my skin. They brought me a cold washcloth and I applied pressure to my hand trying to disperse the swelling. It was going to take a long time, like weeks, for my hand to return to normal. After around 15 minutes, a different nurse came over.  She took my other arm, tied the tourniquet on it, and again tried to insert a needle in my hand.  It took two tries, I was stuck two more times, but the third time was a success.

The nurse hooked me up to the bags of IV “Juice”. First a little more saline, then a bag of anti nausea, then a bag of a steriod and then a bag of my new cancer drug “Fludara”. This treatment was a little different because it only took around two hours. The Fludara bag was much smaller so the treatment was quicker. The nurse came over again and unhooked me from the IV and I was finished. My hand was hurting and I started to develop a big round purple swollen area on the top of my hand. Those are the breaks and sometimes that's how things go.You can't undo whats been done. Now I just had to heal up

I left the office and drove to work. The side effects were not too bad at first and I was able to make it through most of the day. I did leave early as I started to get a headache. I drove home. When I arrived home, my head was hurting, my hand was hurting and I was tied. I took some Tylenol and lay down.

I had four more treatments to go for the week. Tuesday I would do it all over again, bad hand and all................................