Nathan Day: 2009

Well I have started my last in-patient chemotherapy, and as you can tell from the title I am excited. I am looking forward to getting with the in-patient portion of the treatment, but it looks like I still have about 13 more months of treatment left. I was originally told that I would get six treatments, radiation and then a stem cell transplant, but now it looks like I am going to get eight chemo’s, a month of radiation, and one year of what the Dr. called maintenance chemo. I guess the most important thing for me to remember is to stay flexible. There are so many ways to treat lymphoma and there is no one right answer. It is also reassuring to know that the Dr. increased my treatment length because I am responding well to the treatments, and not because they aren’t working.

The start of the eighth treatment took a while to get going. On Monday, January 12th, I had my blood drawn and then had an appointment with the Dr. My blood levels were in the normal range but close to the lower limits however, still good enough to start treatment. On Tuesday I was admitted to the hospital and I was expecting to receive chemo that day. The problem is that my urine pH has to be around 7 (neutral acidity/alkalinity), but my pH was 5.4 (acidic). They gave me sodium bicarbonate to raise the pH. At about 3:00 AM my pH was good enough to start. The nurse asked me if I was supposed to start chemo after the pH was neutral or in the morning. I told her that I was informed that the treatment would start as soon as my pH was within limits. She checked with the on-call doctor and that doctor said to just wait until the morning. The problem with that was that I had another blood sample taken at 4:00 AM which showed that my white blood cell count was no longer within limits and therefore they could not start chemo. The nurse told me that I was because this happened I now had to check out of the hospital and wait until my white blood cell count was back within limits. So, basically, I got a free night stay at a hospital. Actually I say free but the rooms are $1800 a night, so I kind of feel like it is the most expensive resort I will ever stay at in my life.

I was administered a shot called Neupogen, which increases my body’s production of white blood cells. I was given two days for my body to react to the shot and then I had a follow up appointment on Friday. When they rechecked my counts all of my blood levels were back within the normal limits so I was readmitted into the hospital as an inpatient. I guess that leads me to today, Saturday, I am now sitting in my hospital getting a chemotherapy called Methotrexate. This kind of chemo is sensitive to ultra-violet light so there is a brown bag over the chemo to protect it from breaking down. I like to say that it is so cool that it has to wear shades, but then again I am kind of a nerd so I say a lot of dumb things. It takes about 24 hours to transfuse the chemo and then I will get high dose cytarabine. This is the chemo that they have to give me a motor function test every 4 hours to make sure that too much of the chemo hasn’t passed the blood-brain barrier. What happens then is that too much chemo is in your brain and will more than likely cause death. I’m thinking that with something like that they should check my motor function more than every four hours. I want them to check it like every 15 minutes but apparently the nurses and Drs have more patients than just me. Therefore I think I am going to have to check myself and make sure nothing crazy is going with my coordination and motor skills. I’m going to have to tell my parents if I start to talk like I have been sniffing glue then they have to send for the nurses. What is reassuring is that all of the nurses that I have spoken to about it have said they have never seen that happen. My Dr. has been practicing medicine for over twenty years and he has only seen it a couple of times, and every time it has been an elderly person.

Another issue I have had to deal with here is that I can no longer handle the food here. It started out tolerable, but as the treatments have progressed the food has gotten more and more disgusting. It is now to the point where I don’t even want them to bring the food into the room. I think it is a combination of the fact that the food smells terrible and when they remove the lid it releases all of the smells of the kitchen. But what I think is a bigger factor is that I have a bad association problem with the smell and chemo. Whenever I smell that food I am already nauseous from the chemo. So whenever I smell the food I get even sicker. Last treatment cycle I had my parents sneak in In-and-Out Burger. That was awesome the first couple of times but after a while I got sick of that too. I was thinking that this might be good aversion therapy. I could eat food from all of the fast food restaurants until I got sick of them all. That way I would no longer crave that “Fourth Meal” or “The Golden Arches.” I don’t think I would want to ruin pizza but all of the greasy burger joints would be easy to let go.

Well I’m off to watch a movie. All of the rooms here are hooked up to video on demand so I can watch some current movies. I guess that is the least they can do for the cost of the room.

Well it has been, what...three or four months since I last wrote on this thing. If you are reading it then I am surprised that you even checked back. And yes...no news is good news. I am doing great and I only have two to three months of treatments left.

So, here is what has been going on. When I was first diagnosed with lymphoma my doctor gave me a chemotherapy regimen with six treatments that were scheduled to take one month each. Last month I finished my sixth and what I thought was my final treatment. I went to my oncologist and he said that I have a decreased chance of relapse if I get eight chemotherapy treatments instead of six. He said that in order to establish efficacy, research shows that eight chemotherapy treatments is the best option. I told him that I would rather do two more chemotherapy treatments now than have to do six more later. I know that there is always a chance that it will come back but I want to do anything I can to decrease those chances now.

I asked my Dr. why he initially prescribed six treatments if eight treatments are the best regimen. He said that eight treatments is not normally an option because most people get too sick after six. They either lose too much weight or the chemo takes too big of a toll on their health. He said that since I was doing so well physically that my body would be able to handle the additional two treatments. As a side note I am doing so well physically that I think I am one of the very few who actually gains weight during the treatments. The nurses always ask me how I feel, and what my appetite is like. I would tell them that I my appetite hasn't gone anywhere, in fact I'm just as hungry as I always have been, but I can't answer because my Dad beats me to the punch. He tells them sarcastically that he is worried about my appetite and that he wants something for it. Then he tells them it isn't something to get my appetite back, he wants to get me an appetite suppressant because I am eating him out of his house. I think that I have gained weight because despite the fact I am doing well, I am not working out as much as I used to. That coupled with the fact that I sit around and eat all day I have been able to keep my weight on.

I also asked my doctor if getting two additional chemo treatments would increase my chances of getting a thing called chemo induced lymphoma. I had read that one of the causes of lymphoma is being immunosupressed. Whenever you get chemotherapy you become immunosupressed. So by getting chemo you can actually later on get lymphoma. It happens to some people who have other types of cancer; colon, breast, lung etc. Some of those people go on to develop lymphoma as well, because the chemo has damaged their lymphatic system. My oncologist said that the damage to my lymphatic system has already been done, and that two more treatments of chemo would not change my chances of developing lymphoma later. That settled any concerns that I had about putting more toxic chemicals directly into my veins.

The week before my Dr.'s appointment I had had a PET scan. A PET scan is where they inject me with radioactive sugar and then give you a CAT scan. Cancer cells do not get the signal to stop growing and they use sugar in order to reproduce. A PET scan measures where the sugar goes in the body. Any spots that have a large uptake of sugar are cancerous. The Dr. had the results of the PET and it showed that the cancer has shrunken from the size of a softball to two centimeters and that there were no active cancer cells remaining.

I have also had a problem with my heart. Since starting chemotherapy my heart rate has slowly increased. My current resting heart rate is in the high 90s/low 100s. I went to a cardiologist and he said that I have tachycardia, which means I have a fast heart rate. With all of the chemo I am getting the doctor did not want to give me any additional medicine, but he gave me an echocardiogram, an ultrasound of the heart, to see if there was any damage to my heart from the chemo. The last thing the doctor told me at the appointment was that my heart was not damaged from the chemo and that hopefully once I am done with the chemo my heart rate will return to normal.

So I guess all in all things are going great. I am still here in Phoenix so if you see a fat bald chemo patient come by and say hi.