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................................

Round Two

Driving over from the Diagnostic Center I arrived at my Oncologist office. My girlfriend met me there as she wanted to hear the news.  I checked in at the front and they walked us back to a room.  We waited in the suite for Doctor “S” to come in. Then the door opened and my doctor entered the room. 

By now, he knew that I was the type of patient that was proactive in my own health care. Although  I’m sure he knew I had already read the reports he proceeded to explain to me and my girlfriend that the treatment had failed and I still had the lymphoma. (I will tell you in a future blog what my new doctor told me about the treatments and why they did not work). Now the doctor never really needed to look at the actual CT Scan films, he only needed to read the reports. I had brought  the films in with me and asked if we could look at them again. He held up a couple of the films, they are approximately 24” wide by 18” tall. We looked at them and he showed me spots on the film, my lymphoma. My girlfreind, who was African American, turned pale as her jaw fell open and she looked at me in disbelief. Dr. "S" had a discussion with my girlfriend and me about how we could proceed. He gave me two options, Option #1 –Close observation. That meant, let’s do nothing and just wait and see what happens. He had already given me that option once before when I first saw him. To me what he said was you’re going to die anyway so what’s the point. Then he gave me Option #2 – Trial of chemotherapy with Fludara for a period of 5 months.

My Dad had been in town to see how I was getting along. He did not like Florida because it was too hot, but his visit was during the cool time of the year and he had returned home. My girlfriend was with me now, but to be honest with you, it was really my decision either way. It’s always good to listen to every ones opinion, but the decision really comes down to the person with the illness. I chose to try Fludara (in a future blog I will also tell you what my new doctor told me about Fludara).

Fludarabine (Fludara) is a type of chemotherapy that is used to treat Chronic Lymphocytic Leukemia (CLL), which is a cousin to what I have. Some of the possible side effects from the drug included:  severe suppression of the bone marrow function, instances of life-threatening and sometimes fatal autoimmune illnesses, hemophilia (a bleeding disorder), fatal pulmonary toxicity (lung poisoning), severe central nervous system toxicity, including coma, seizures, agitation and confusion, and more.

Life is always a gamble, a choice that one has to make. The prescribed dose for this chemo was to receive treatment 5 days in a row, once a week, every three weeks. That meant I would receive 30 doses of Fludara. My girlfriend and I left the doctors office and walked to our cars, we both got into our cars and drove off. Monday I would start my new round of treatments.

Next time, Round 2……………………

Treatments Complete?

I made it through the three weeks after my treatment and it was now time for my next treatment. The routine was, I  would  feel worked over for the first day or two after treatment, then the side effects would start to set in. The side effects would then fade a little after two weeks and by the third week, I would feel semi-normal. Then it would be time for treatment again.

I would follow this routine for the next five treatments. Take the Juice, feel like sh*t for two weeks, get my blood checked, then be ok for a week, then treatment. After 5 months, my course of treatments were complete and it was time to meet with Dr. S.

Two weeks after my final treatment I went in to get my blood checked and met with my doctor. He felt my neck, underarms, groin and spleen. He did not say much. I asked what he thought and he responded that he wanted me to go get another CT Scan. With the slow-growing type of Lymphoma (Cancer of the lymph nodes) that I had, the CT Scan was the best way to evaluate my progress. The reason the CT Scan was the best test for my cancer is that the lymph nodes should be small, that is less than one centimeter (1cm) in size. If they are bigger then that, well then, you probably have Lymphoma.

The office manager set an appointment for me to go to the Diagnostic Center to get my Scans. After fasting the night before it was early in the morning on May 4^th 1998 when I arrived for my CT Scans. In my earlier blog I’ve describe the procedure of the CT Scans. I received the tests and went to work. I went back to the Diagnostic Center on May 7^th and picked up my films and a copy of the report.

Once again, I sat down inside my car and opened the envelope. I was hoping the report would say that I was now free of Cancer. I mean I just took all these chemo treatments’ and had lived through a type of hell so I could get well. I open the envelope, took out the report, and scanned through all the reports. They read as follows…R-CT Pelvis: Unremarkable (that was good), R-CT Thorax – Lungs: No evidence of mediastinal or hilar lymphadenopathy (that was also good), R-CT Retro Contrast Only  No evidence of retroperitoneal lymphadenopathy (more good news) R-Chest –Pal: Negative chest  (I was starting to feel good).

Now for the final report…R-T Head/Neck Cont Comparison 12/3/97 Contrast enhanced CT examination of the neck demonstrates numerous bilateral anterior and posterior triangle lymph nodes, submandibular and submental lymph nodes. Some have decreased slightly in size. However, most remain pathologically enlarged. Greater then 1 cm (That was BAD NEWS).

I was disappointed. I became overwhelmed with emotions. Damn, all that chemo and no change. I still had my Lymphoma. Every minute of every day is a battle when you are trying to outlive cancer. I gathered my emotions, as I knew I had to be strong to beat this beast.

I drove to my doctors office for my follow up appointment.

The Next 2 Weeks

After a couple of days of acid reducer, I was starting to get relief from the heartburn. I had been dealing with abdominal pain from my groin up through my sides, chest and throat. In addition to that pain, there was the nausea plus there was the pain from constipation. All the while, I had to go to work and act like everything was OK. That was probably a good thing because we are what we think, right.  It had been 5 days now without being able to go (if you know what I mean). Then after two days of laxatives, the medicine started to work, it was difficult and painful, finally I had results. I slowly started to overcome some of my side effects. Now I could better experience the feeling of being run over by a train.

I also suffered from three more side effects. The first of these affected my taste and smell. Certain foods tasted bad and certain smells made me want to throw up. Secondly, I started to develop another side effect called Peripheral Neuropathy. The chemo damages ones nerves and or nervous system. My result was that my hands and feet were tingling, burning and I had some numbness. I also soon realized, one day as I tried to jog across the street to avoid a car, that I suffered a loss of coordination, I felt spastic. My final side effect was what is called Chemo Brain. I had difficulty thinking, I became El Stupido. OK I wasn’t that bad, but it was as if I had a touch of dementia. Other side effects of chemo include organ damage, like damage to ones heart, kidneys, etc. (I think that covers most of what happened to me)

It’s hard to remember the protocol of my Lymphoma treatment from 15 years ago; things have changed in the years since. Upon reflection, I had to wait two weeks after treatment to go back to the doctor for my blood work. They wanted the chemo to do its work on my system, killing all the cancer cells (and the good cells too). They wanted to check to see if I had recovered so I could receive my next treatment. I was scheduled to get chemo every three weeks for six treatments. It was now 14 days later and I had an appointment to give some blood so my doctors office could check my CBC. A complete blood count (CBC) measures the concentration of white blood cells, red blood cells, and platelets in the blood. I went to the office and the nurse drew my blood, gotta love needles! They processed my blood sample and gave me a print out. I was good to go for my next treatment. My white count, as expected, was at the minimum allowable level (around 3.5) but it was good enough to receive another treatment. My other counts were not too bad. I left and went home.

The three-week period between treatments would consist of two weeks of suffering and one week of feeling almost normal (almost). I would eventually find out that the Peripheral Neuropathy side effects would last for a year and a half, but that was OK with me, you know why??? cause I was ALIVE!

Until next time………

The Daze After

It was the day after my first treatment. I woke up in the morning trying to evaluate how I was feeling. At first, it wasn’t too bad and I started thinking everything was good. I took some of the nausea medicine then I took a shower. I wasn't  sold on the nausea medicine, it made me feel even more nauseous. Now that I was fully awake, I could evaluate myself a little better. Then it hit me hard, it was the feeling of having been run over by an 18 Wheeler Mac Truck. I felt totally wasted and I had some anxiety, a side effect from the steroids. plus I wanted to vomit. I got dressed anyway, I made a light breakfast and went into the office to work…life goes on.

It was difficult to concentrate at work and people were asking me how I was doing. I managed to work most of the day. I got the important things squared away and organized my desk and my remaining tasks. Then I left early, it was around 1 P.M. in the afternoon. I drove home, went inside and lay down on the couch. I figured I was going to start having to work an abbreviated schedule, atleast until the side effects wore off. It was only the first day after treatment. I was starting to get heartburn so I propped my self up a bit to alleviate the pain. After some time I had to get up and I chewed some Tums, they helped a little bit. I rested for the remainder of the day suffering with heartburn. I chewed some more Tums  a few more times, then I went to bed.

The next day came and I was still feeling like I had been run over by a truck.  I went into the office and worked until lunchtime. I left and drove to the health food store. I bought some supplements and some vegetables. I also picked up all the health magazines. Then I drove to a department store and bought a Juicer. I decided I wanted to give my body as much nourishment as possible. My new goal was to strengthen my immune system. I drove home and went inside. I was tired so I sat down. I got one of the health food magazines and started to look through it.  After reading for a while, I got up and put up the vegetables, supplements and the Juicer. I made a little food, ate and then lied down. That was my day.

It was the third day after my treatment and now a new problem developed. I had not (cover your ears) had a bowel movement for three days. Now my lower intestines were starting to cramp and became painful. The Dr. didn’t tell me anything about the side effects of heartburn or the constipation. Both became very difficult to deal with. I went to the pharmacy and bought some over the counter medicines for both of these side effects. There are couple more side effects I will discuss next time as they took a while to develop.

In four more days, I was scheduled to go back to my oncologist’s office to have my blood levels checked. In the mean time, I was just hoping I could go to the bathroom. Let me tell you, feeling like I had been run over  by a school bus, the nausea, the heartburn pain and the constipation, were no fun.

But life goes on............

The First Night

The nurse finished going over the post treatment routine with me. She then unhooked the IV from my needle and started to remove the needle from my hand. It was taped on very securely so it took a little work to remove all the tape. It was a little painful as she ripped the hair off the back of my hand. Then she pulled the needle out of my hand and applied a piece of gauze. I held it in place and applied pressure to stop the bleeding. It wasn’t bleeding too much and then she replaced it with another piece of gauze and taped it on. I was just starting to feel the effects of the day. I was a little light-headed and a little dazed but not too bad. I pulled it together, packed up my belongings and said goodbye. They gave me an appointment card to come back in one week so they could check my blood levels.  I walked through the lobby, out the front door and walked to my car. I unlocked the car door, put my belongings inside and got in.

I sat there for a minute thinking about the day. I had just received several bags of poison. That’s what chemo is. It’s like spraying the weeds in your front lawn with poison and waiting a few days for them to start dying. The poison was already making me feel a little weird. It’s hard to describe, but I just felt a little off kilter and I was starting to get a mild headache. I started the car and drove to the pharmacy. I arrived and parked my car and went inside to get my prescriptions filled. I just waited because I definitely did not feel like coming back. After about 25 minutes my prescriptions were ready, I left and drove home
.
The full side effects of the treatment were still to come. For now, I just felt wiped out. I went inside my house, threw all my junk on the table and lay down on the couch. I laid there for a few minutes, then I got up and put away my clothes, unpacked my lunch bag and sorted out my prescriptions. I had some strong Ibuprofen, some pills for nausea, some pills for anxiety and some pills for sleeping. I was supposed to take the anxiety and nausea pills every four hours.

I decided I would take a shower and it made me feel a little better.  I made a light dinner and ate light, as I was feeling nauseous, as if I wanted to throw up.  I sat down and started to zone out watching some TV. It was getting late and I figured I would try to go to sleep. I got up and realized I felt like I had been in a fight. It was more like I felt like I had been a punching bag, taking blows to the body all day. I dragged my beaten body to the bathroom so I could brush my teeth. I took the sleeping aid then I dragged myself off to the bed. I laid there for a while and fell asleep.

While I was sleeping the steroids started to produce some of their first side effects. After a couple of hours of sleep, I was awake. I couldn’t get back to sleep, I had anxiety, it was another side effect, and I got up and walked out to the living room. I could have laid in bed and watched TV but I was restless. I was starting to feel my mind racing. I could not read I was a little too antsy for that, but Life always offers a blessing. I turned on the TV and got lucky. My favorite TV show when I was a kid was Walt Disney’s “Zorro”. I was flipping through the channels when I came to the Disney station. They had on a show called  The Vaults of Disney. The show was one of the episodes from "Zorro". Even though I could not sleep, it turned out great, as I was able to watch my favorite TV show. I figured if I was going to be awake every night this woulld be pretty cool. After the show was over I just flipped through the channels for awhile and finally I fell back asleep.

More side effects to come………….

Gettin' The "Juice"

I thought the first bag of “Juice” was chemo, but it wasn’t, it was an anti nausea medicine. They give this to patients to help prevent the feeling of wanting to vomit caused by the chemo. It didn’t take too long to finish that bag, just long enough to make my arm cold. The nurse came over and switched out my bags. She hooked me up to a rather large bag of “Juice” and started the drip, drip, drip.

I told the nurse my arm was getting cold and that it was hurting. She came over and checked the IV and the needle to make sure it all was ok. She told me that the chemo was cold and that it was making my arm hurt. She decided to slow down the drip until the “Juice” warmed up a bit. Now this was back in the day when they did not use pumps to regulate the speed of the drip as they do today. (FYI, I will be starting new treatments on 1-17-2012, I will speak about this in a future blog, but I have 14 years of chemo treatments to cover first).

Receiving all that liquid “Juice” makes one have to go. I carefully stood up so as not to rip the IV out of my hand. The IV pole sits on three wheels; I grabbed the pole and rolled it along as I walked to the restroom. After washing my hands, I went back to my chair and sat back down. Now the challenge was to pass the time. With one hand free and the other attached to an IV, I reached for my bag and pulled out my lunch. I grabbed an Apple and I snacked on it and watched the TV. I think something like Judge Judy was on. After I snacked, I pulled out a book and read for a bit. Then my eyes got droopy, I grabbed my jacket and used it to cover my upper body, I adjusted the recliner back and closed my eyes, I rested for a while.

It took about three hours to finish the big bag of “Juice”. The nurse came over and switched out the bags. Before she hooked up the slightly smaller second bag of “Juice”, she pulled out a syringe and gave me a Push. A push is what they call it when they inject a shot into the port on the IV tube. I asked what that was and she said it was Decadron, more steroids. I had already swallowed my Prednisone steroid tablets and now I was getting more in the form of a shot. The steroids help in shrinking the lymph nodes, but there are side affects.  The nurse hooked up my next bag and started the drip, drip, drip. I still had a couple of hours left, so I reached for my bag and ate the rest of my lunch. Got my book and read a little more and of course had to use the restroom a few more times.

Remember this was my first treatment. As my last bag of “Juice” was nearing the end I looked at the clock, it was 3P.M. I had been there six hours when the nurse cave over and sat down next to me. She gave me a list of instructions on how to cope with the coming side effects. Chemo kills all the fast growing cells in your body. The chemo I was receiving was designed to kill all my white blood cells. It’s like killing your immune system. The chemo does not discriminate in which cells it kills; it just kills them all. Stomach cells, hair cells, etc. all grow fast and that’s why people get sick and lose their hair. The nurse went over the list of instructions and then gave me several prescriptions; for nausea, anxiety, sleeping, pain. I found out later that there were a couple of prescriptions that she did not give me. Those were the ones I REALLY NEEDED. Live and learn.

Side Effects, next time…………….

My First Treatment

I started my treatments in December 1998. Before I left home, I packed a lunch because I knew I was going to be their most of the day. I also brought a jacket so I could stay warm. I arrived at my oncologists’ office around 8:30 a.m. I checked in, paid my co-pay and then went straight to the Infusion Room. I was the first one there and chose a good chair to sit in for the rest of the day.

The first thing the nurse did was take a blood sample. She proceeded to tied off my upper arm, inserted a nice big needle into my vein, and drew my blood. They wanted to run the numbers to get a base line for my white and red blood cell count. During the next five months of treatments, they would be checking my blood count every three weeks.  Oncologist’s offices have the necessary equipment to perform basic blood tests and they completed my blood test in the office. Back in those days, my blood counts were all in the normal range except my white count (WBC) ,which was high, but all the other counts were normal. Normal red count (RBC), normal platelet count and so on. Receiving chemotherapy is not for a person who does not like needles. One is stuck often during the course of treatments.

Now the fun was about to begin. The nurse rolled over a tray type cart that contained all the necessary items to get me hooked up to an IV. Next to each chair was a pole that was used to hang the bags of liquid medicine on. The nurse rolled up a stool and sat next to the side of the chair. I laid my arm straight out on the chair arm and the nurse again tied a rubber tourniquet around my upper arm. Then she started to tap the top of my hand while I made a fist. She picked up the needle and tried to insert it into one of the veins on the top of my hand. Sometimes this only takes one attempt and goes smoothly, but often times it takes two or three attempts. Back in the early days, I had great veins and it was not that hard to thread my vein with the needle. However today my vein seemed to wiggle around a bit and she was having a little difficulty getting the needle in. She would wiggle the needle around under my skin pulling and pushing it in an out and all around trying to find my vein, and it hurt like hell. I’ve heard many a person scream in pain during this process, but I just tighten my jaw and kept silent. The fishing expedition didn’t take too long and finally she was successful. She inserted the needle in my vein and let go of it to see if some blood would come back into the line.  That way she was sure it was in the vein. Then the nurse held the needle and IV tube in place as she secured it to my hand and my arm with tape. That IV wasn’t going anywhere unless I was to accidentally rip it out.

The next procedure was to insert a syringe needle into the IV port and inject saline solution. This was done for two reasons: one was to flush out the vein and the other was to double-check that they were actually in the vein. If for some reason they are not truly in the vein the saline solution will just go into your skin and cause a big lump to form (I will tell you a story about that in a future blog).

When she completed that, I was ready. Now I wasn’t hooked up to any bags yet, I only had a needle in my hand and an IV tube taped to my arm. I took this chance to go to the bathroom. I returned to my chair (yes I was my hands!!!) and sat down. The first of three bags was hanging on the pole. The bags all have tubes coming out off the bottom and the nurse came over and connected the IV bag to my tube. I asked what type of medicine I was receiving and she told me I was just going to get a few more minutes of saline. I decided to give my chemotherapy liquid a nickname; from now on, it would be called The Juice.

The nurse came back and had me swallow a pill. I asked her what it was and she said it was my prednisone (I will tell you more about that later). Then she switched my bag to The Juice. I was now officially receiving my first treatment of chemo. As the bag hung on the pole and I watched it drip, drip, drip, my arm started to get cold.

 Until next time………