Tuesday, May 31, 2005

Rites of Passage

I don't really know how to describe the last 72 hours. It's been nuts. Let me make an early apology if I have typos. I can barely even feel my fingertips from the chemo. And this entry is not for those who don't like details...

I was suppose to start a 24 hour chemo drip of Methotrexate (see my pic below) Saturday morning. I ended up not starting until Sunday at 3AM in the morning.

What no one ever told me is that the chemo would not be started until my urine met a certain PH level so they knew my kidneys would be able to take it. The hospital was short staffed over the weekend and they weren't checking my pee samples so I couldn't ever get started. I would press the nurse call button and not hear anything for 15 or 20 minutes. It was so bad.

My mom and Mike was staying with me.. and I really needed their support. Mike got mad at the hospitial staff becuase it had been over 10 hours and they still hadn't started the chemo. The hospitial finally sent 2 security officers and a nurse supervisor to my room. The nurse supervisor was at first rude to me and had her security backup with her.. but things quickly started to change when I started talking. My mom and Mike was there in the room but the nurse told them "who are you people.. let me talk to the patient."

I basically told the nurse supervisor and the security guards that if I had a job and I didn't do it then I would be fired. Well, the nurses on that day had not been doing their jobs and I was having 3 urine samples pile up and no one test them and no one responding to my calls. The nurse told me I was "nit-picking" but I told her MY LIFE WAS ON THE LINE and if SHE WAS IN MY PLACE SHE WOULD EXPECT MORE. Before it was over, one of the security guards was nodding her head in agreement with me. It almost wanted to make me laugh. It was a terrible way to start, but I must admit that after making all that noise I got better treatment from there on out. 

So now to my treatment, it finally started at 4AM on Sunday. The first hour was a big dose and then it continued for 23 more hours (all via IV). I didn't feel much while I was getting the actual chemo. The biggest pain was having to pee in a cup and then call the hospital staff every single time. I was being given lots of fluids so I had to go a lot. I probably had over 100 pee samples.

After the 24 hours of methotrexate, I had 12 hours of nothing. This is when I started to feel bad. I played my ipod and played music because it was the only thing that gave me peace. I felt so terrible, probably worse than I ever had in my life. I didn't feel like I was dying but just the worst ill filling you can imagine.

At some point, they started to give me a recovery drug every 6 hours. Memorial day was at some point, but its all a blur to me what happened the past few days.

My doctor came about 1030a this morning and told me that all the 24 hour chemo I had had was cleared from my blood. It was the best feeling. I was free from the hosptial!!!

Me and my mom then walked over to the doctors office and they gave me another shot of something that is suppose to make my body create more white blood cells.

My doc says I am doing great.. and that I still have twice the amount of white blood cells that he would have expected me to have given my treatment.

I feel really bad, but trying to keep my spirits high. My mouth has a very salty taste in it and my fingers are so numb I can hardly open containers and that type of thing. I have to ask for a lot of help. I'm doing a good job of kicking this cancer though! My mom heads back to Tallahassee tonight or tommorrow and I am really thankful that she came to be with me. Her and Mike being with me at the hosptial made it a better experience.

I am back at the doctors office tommorrow for more Rituxian. I hope I start to get my strength back up. I feel like I should get a badge of honor or something for this hospital visit I just came back from. It feels like some kind of rites of passage. Hopefully the next hospital stay will be a little more plesant. And hopefully I will start feeling better soon.

One bag of my 24 hour chemo drip. This bag lasted about 5 hours or so. This is a chemical called Methotrexate.

Friday, May 27, 2005

Day 10

Today was another day off. I probably feel better today than I have in the past week.

My mom came to town today and met some of the nurses at the doctor's office. (She wanted to make sure they were taking good care of me). Tomorrow morning I will be going to the hospital for a new phase of treatment. One of the nurses thinks it could be rough for me but we shall see.

I felt so good today I ended up cutting my lawn! And it's a push mower. The nurses told me I would be feeling it tomorrow.. but I think staying active (within reason) and doing "normal" things can be good for the mind and body.

I probably won't write again until Monday or Tuesday. Let's all pray the hospital stay won't be so bad and my blood counts don't drop too low.

Thursday, May 26, 2005

Good report (Day 9)

I got a good report from the doc today. Despite the rigorous chemo I have been given, my white blood cell levels are still looking good. Just proof that I am a true fighter at heart.

I also got the results back from the first spinal tap... NO cancer cells detected in my central nervous system. This is excellent news.

The side effects of the chemo are starting to drive me crazy. Mostly because it's something I never planned on. I thought I would feel weak and sick at times.. but didn't know I would be on steroids that raise my heart rate, make me feel jittery, make me extremely sensitive to light. I felt the first time like that yesterday and today I tried to enjoy it. Not much I can do to make it go away. But I just don't like feeling so dis-associated from reality. I hope I make sense. I am trying to explain things the best way possible.

One of the nurses was explaining to me that a "normal" cancer patient would be getting the treatment I get in ONE DAY over the course of ONE WEEK. So you can only imagine what that is doing to my body and how it makes me feel. I think I am doing great considering.

I still have yet to have any problems with vomiting or anything like that, although I do have a general ill feeling that hits me from time to time and is usually unpredictable.

My appetite has been great.. another side effect from the steroids. I picked up a copy of Lance Armstrong's book from the library and will start reading it soon. Tomorrow I don't get any chemo and Saturday morning I'm back for a stay at the hospital.

Wednesday, May 25, 2005

Rituxan, Dose 2

Today was Rituxan #2 and my reaction this time was better than last week. It's hard to believe that I have made it through my first week of treatment.. it's seemed like a month or more.

This morning, I started having a new host of side effects. The best way to describe it is that my senses seemed hightened. My pupils are very small and most light seems very bright. My hearing is also not right. I told the nurses this morning and my doctor responded back that this is just my body's reaction to all these drugs that are being pumped into my system.

The good thing is that I haven't felt ill yet today. But I don't know which is worse, feeling ill.. or just feeling so weird that you can't feel normal. I guess it's a toss up.

Tuesday, May 24, 2005

Day off? Yeah right!

Not much going on today. It's my "day off" from the doctor, but it doesn't feel like it. Normally, when you think of a day off you think WEEKEND.. I get to do what I WANT to. In my case, I really have to rest and can't do too much of anything.

Again, I am remaining pretty constant in the way I feel. Sometimes OK, sometimes like I can't even think to move. But I have made it one week and already counting the days until this is over!

Today, for the first time, I have started to notice loss of sensation of my fingertips. This is temporay and should go away once I am off the chemo. I have yet to understand why but the bad taste, the loss of sensation, the sickness I feel from time to time, it doesn't bother me when I think that is is just part of the healing process.

Monday, May 23, 2005

Day 6 Done

So I have pretty much finished my first week! For the first time, I don't have to go to the doctor tomorrow, but will be back Wednesday.

This morning I felt so bad. I really had to work hard just to get up. I felt like I had been run over by a Mac truck or something. But I do feel much better now. It's kind of odd because I am already beginning to learn that a cancer patient's concept of feeling OK is a much different concept than a non-cancer patient.

I have been meeting other cancer patients at the treatment center. Most are older but very encouraging. There was one guy there today (probably in his 30s) and it was last day of chemo. He was so happy. He was like "This cancer better not come back because I'm never going through with this again!"

One elderly man undergoing treatment for prostate cancer came up to me and told me I looked weak but that he knew I was going to be OK. He told me "I don't know you or anything.. but something tells me you are going to get through this and invent something or really make a big difference in the world."

I guess time will tell. :-)

Sunday, May 22, 2005

Back from first Hospital stay!

Well, I made it from my first hospital stay. It probably lasted about 24 hours and wasn't too bad.

I'm feeling pretty good considering all things.

Last night around 1030p I had the spinal tap done and it wasn't bad at all. No pain and the anithesiologist (sp?) had done about 8 that day. The only problem is that I learned this morning they didn't get enough sample to test to see if any lymphoma cells are there--but they did administer my chemo in my spinal cord fluid which also goes to my brain. Normal chemo won't go through the spinal cord. Chances are there is not even any cancer cells there, but they have to treat it protectively. I had no side effects, no pain, from anything.

The nurses at Eastside Hosptial are nice and helpful. It took about 4 hours for them to find a bed for me which was a bit of annoyance, but besides that all was well.

I'm only on day 4 or 5 of actual chemo--about the only side effect I am noticing is that I feel very sick sometimes. But my doctor says this is probably just a form of nausea. When I eat or walk around it seems to get better. My mouth has the most terrible taste in it and at times I feel as I have just drank a glass of Clorox or something--and I can't taste 90% of the food I eat, but that is about the only bad side effects so far.

Back to the doctor's office tomorrow morning.. for more chemo, then I finally get a day off on Tuesday!

Friday, May 20, 2005

Day 3

I must start by saying a big thank you to all my friends and family! Your phone calls and emails have meant so much to me. They've made dealing with this much easier.

CNN, where I work has been awesome as well. You don't know what a good place you work until something bad happens to you. I will be writing my thank you notes but I want to thank the CNN management team for the gifts they sent me. Jim Walton, on behalf of the entire CNN staff sent me an ipod and my department team sent me a $50 gift certificate to amazon.com. It made me a little teary eyed when I got these gifts, I must admit. I am all into music but never had an ipod. It will be great when I am in the chemo room or at the hospital to listen to my favorite tunes. And I will most likely use the gift certificate to buy some books. I can't say the words "thank you" enough!

My mom has told me that I have far too many spelling and gramatical errors in this blog. My response to that is that I think blogger.com needs a better spell check! I've never been one to care much about spelling so long as I can understand what someone is trying to say. Know what I mean?? :-)

I had a minor episode yesterday around 5p that was pretty scary. My heart starting beating like crazy and so I called the doctor's office. I ended up having to call 911 and the parametics came.. but by the time they got there I was OK. They checked my vitals and went on their way.

The doctors and nurses think I had a bad reaction to one of the steriods that I get with my chemo. I go into a state called "vaso-vasal" where my heart rate increases and my blood pressure decreases. It makes you feel like you are dying, but usually what should happen is that you just pass out. I didn't pass out yesterday. And I didn't die! The episode lasted about 15-20 minutes.

I have to take this steriod nearly everyday (via IV) and I hope this vaso-vasal isn't a common occurance.

Yesterday evening the effects of the chemo started to set in. I am beginning to feel very lethargic and sometimes have to motivate myself to do things. I have completely lost all taste in my mouth--but that is something I can live with.

Tommorrow morning I will be admitted to the hosptial. More chemo and they are going to try and do that spinal tap again. I hope they don't find any lymphoma cells in my spinal cord... but I know I have no tumors there and if the cells are there hopefully the chemo they inject will do the trick. Looks like I will be having 6 spinal taps done over 4 months. I don't look forward to it.

So I wil not be able to write tommorrow, I will be in the hosptial. I should be back Sunday afternoon so will write then or Monday.

Thursday, May 19, 2005

Day 2: May 19

Well today was officially the first day of chemo. So far so good. It's very early on, but about the only side effects I notice now is my taste seems to be going away and I feel a little "drugged."

I was suppose to have a spinal tap this morning. The purpose of this was so that a) the doctor can check and see if any lymphoma cells are in my spinal fluid and b) to administer chemo to my my spinal fluid. The doctor tried about 3 or 4 times but wasn't able to "tap" into me, so I will have to have this done this weekend at the hospital by a radiologist or other medical professional. My oncologist doesn't do spinal taps on a regular basis and didn't want me to endure any unneeded pain. He says pregnant women have to have them done so the hospital personnel will be very familiar with the process.

The attempted spinal tap hurt pretty bad.. my back still hurts a little bit. But I just have to stay focused. During the course of my treatment I will probably have 5-6 spinal taps so I will just have to grin and bear it. Not bad considering what would happen if I didn't have these treatments!

I have filled several prescriptions for anti-nausea medication. I rather be prepared if I get those side effects. But for now, it's just wait and see.

I will be admitted to the hospital Saturday morning and should be able to come home by Sunday afternoon. Just having more chemo done and the spinal tap. My treatment is mapped out by days so if it falls on a weekend or holiday, I have to go to the hospital rather than the doctors office.

Wednesday, May 18, 2005


On April 30, 2005, singer Robbie Russell was diagnosed with cancer. On May 11, he found out it was Burkitt's lymphoma.

Day One

You always have to begin somewhere. But where do I begin?

It all started about 2 1/2 months ago. I had a cold and soon after noticed a lump on the left side of my neck. I went to the doctor to have it checked out. The ear, nose, throat doctor I saw told me it was probably just a swollen lymph node. I requested a biopsy but the doctor just put me on antibiotics and steroids with the hope the lump would just go away.

Finally, a few weeks later I had a needle biopsy. The pathologist took a quick look at the cells. She said it looked fine but she would have to send it off to have some tests done. She also mentioned she would have to have it sent off to exclude lymphoma--but she doubted that's what it was.

A few days later I got a call back. The doctor told me it was lymphoma and I had cancer.

How do you react to something like this? I didn't really know what to think. I will not be dramatic but my reaction was more of a: Huh? cancer?

I had neck surgery to perform a full biopsy. The surgeon was able to remove 90% of the lump. The surgery wasn't all that bad. My neck was a little sore and I still don't have all my feeling back in it--but it was a breeze. But since lymphoma runs in your lymph nodes (throughout your body) just because the tumor was removed didn't mean that the cancer was gone.

I had more tests done and was told I had Burkitt's lymphoma (non-Hodgkins). This cancer is usually only seen about 100-300 times per year in the United States and usually in children. The bad news about Burkitt's is that it can be very aggressive. The good news is that it can be CURED if one can endure the extensive chemo. The other good thing is that my cancer had not spread beyond my neck. I was in Stage 1 and the doctors could never really explain why it hadn't spread yet.

On 3 occasions, I went to Georgia Cancer Center at Dekalb Medical Center in Decatur, GA. Everytime I was in the office, it took more than a 1 1/2 hour wait. The patients were often upset about waiting.

On Thurs., May 12, in an act of desperation, I started calling oncologist around the Atlanta area. I told them I was supposed to start chemo soon (and I had a very aggressive form of cancer) and told them I needed an appointment right away.

I was able to find an oncologist closer to me (in Snellville, GA). You would not believe the attitude I got from the other office when I told them I was going to get a 2nd opinion. They didn't want to release my medical records because the lady in the office told me she was overworked. I told her my life was on the line and finally she made arrangements for me to get the records to the new doctor.

On Friday, May 13, I had my IV port installed in my left arm. That was a event all in itself. (It took 6 hours to do a 20 min. procedure) and the Dekalb doctors refused to give me sedative. Hopefully that will be the last time ever I have to sit foot in Dekalb Medical Center. I hate that hospital.

Now I am going to Emory Eastside Medical center--which is much, much better. The front office staff is friendly and the nurses really seem to care about the patients. It's a really good atmosphere.

So today, I started treatment with Rituxian. It's a drug that is suppose to suppress the lymphoma but doesn't have the harsh side effects of chemo. Everything went well except my throat got scratchy at one point and when it was over I had a small migraine. But it seems to be passing now. I will officially start chemo tomorrow.

The next 4 months will be difficult. I will be at the doctors office nearly everyday and in and out of the hospital. But I know that I will make it through and I can continue on with my life. One of the main things I would like to do once I am well is finish my first commercial dance song.

I have decided to start this blog to place all my feelings here. At first I wanted to call it "Battling Burkitt's," but that just isn't the right title. I'm calling it "kicking cancer" because that is just about what I am going to do. I am not going to let this disease bring me down! I am just going to focus on God healing me and what a wonderfully life I will be able to live once this is all behind me.

I will write here and share my experiences as much as possible.