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.