Today was an extremely positive day in the world of Bryant. As I've mentioned before, in previous posts, White Blood Cell production is the name of the game. Neutrophils are the White Blood Cells that fight and prevent infection. My condition resulted in the slow decline of these cells to 80 per cu/ml of blood. For a frame of reference, the normal range for a healthy person is between 1500-7800 per cu/ml of blood. I have had zero neutrophils per cu/ml of blood for the past month. Imagine my surprise when I got my daily results and saw 48 neutrophils raving it up in my bloodstream today! This is a very encouraging sign and shows that my bone marrow is beginning to produce blood cells again.
Up until this point, it's been very difficult to explain when I may be able to go home. I now have a benchmark to reference. Once my neutrophil count hits 500, I'll no longer need to wear a mask in public. Once my count hits 1,000 for 3 straight days, I'll be considered in remission and be allowed to leave Baltimore. There's still no telling how quickly my numbers will rebound, or if they will rebound to normal counts, but this is definitely reason for excitement.
Rave! Rave! Rave! Untz! Untz! Untz!
Friday, August 12, 2011
Thursday, July 28, 2011
Treatment Round Up
My 4 day regimen of High Dosage Cyclophosphamide chemotherapy is complete. I can say that the chemotherapy is definitely hard on the body. The hospital was pretty good about letting me know what to expect. I was saddled with most of the standard side effects: nausea, hair loss and loss of appetite. The most uncomfortable side effect was hemorrhagic cystitis and required me to be hospitalized for an extra three days. It's an extremely painful condition for any male to endure. Aside from that I've been doing pretty well. All my counts dropped, as expected, and I'm now receiving GCSF (neupogen) until my white blood cell counts return to an acceptable level (could take between 2-6 months).
This is actually the most taxing part of the treatment, because patience is required. There is no definitive answer as to when I'll see progress, so here I wait. Day 23 and always moving forward.
This is actually the most taxing part of the treatment, because patience is required. There is no definitive answer as to when I'll see progress, so here I wait. Day 23 and always moving forward.
Thursday, June 30, 2011
Treatment
After several weeks of waiting for test results to come back, everything is finally in and a treatment date has been set. The treatment is called High Dosage Cytoxan (Cyclophophamide). As I mentioned before, Aplastic Anemia is often found to be an auto-immune disease. In auto-immune diseases the body attacks itself. In my particular case, it's believed that a certain type of white blood cell, lymphocytes, are attacking my bone marrow cells (stem cells) and inhibiting these cells from producing enough blood to sustain myself. Bone marrow cells possess a particular amino acid, which make them resistant to Cytoxan. Lymphocytes, neutrophils, and other cells that comprise the immune system do not possess this amino acid. The idea behind this treatment is kill off all the immune system cells that could possibly attack my bone marrow cells (bringing my immune system to zero). Once that's complete, I'll be injected with GCSF which stimulates the production of bone marrow cells. The goal is to have my bone marrow cells regenerate an immune system, from nothing, like that of a new born baby, that does not attack itself. For informational purposes, I'm going to lay out what I'll be going through.
Cytoxan (Cyclophosphamide) is a chemotherapy drug that's been used on cancer patients for many years. It's a highly immuno-suppressive drug, that I'll be given intravenously, for 4 straight days. During this time, I'll be admitted to Johns Hopkins, monitored closely, and given a number of prophylactics (anti-fungal medications, anti-biotics, anti-virals) in preparation for my hospital discharge. I'll be discharged from the hospital on the 5th day in order to continue treatment as an outpatient. It sounds a bit counter-intuitive to be released from the hospital with no immune system, but statistics show that a person is much more likely to catch an anti-bacterial resistant strain of infection, at a hospital, than anywhere else.
I'll then be seen at IPOP, a special area of Johns Hopkins set up to deal with immuno-suppressed patients, everyday for 60-90 days. The name of my game will be to avoid germs, infected people, and little kids at all costs. I'm completely stocked with respirator masks as well. The danger with any immuno-suppresive form of chemotherapy is infection during the time of immuno-suppression. Fevers are a very serious matter and I'll need to monitor my temperature constantly. At the first sign of infection, I'll be directly admitted to IPOP for intravenous anti-biotics/anti-fungal medication, as I won't have the defenses to fight off so much as an upper respiratory infection. It takes about 60-90 days for the bone marrow to produce a significant amount of white blood cells to that I can fight off infection on my own. Once those numbers rebound, I'll be able to leave Baltimore and continue supportive treatment in Dallas or Oakland. It takes an additional 3-5 months for my other numbers to rebound to normal. Fathers better watch their daughters on that day.
Cytoxan (Cyclophosphamide) is a chemotherapy drug that's been used on cancer patients for many years. It's a highly immuno-suppressive drug, that I'll be given intravenously, for 4 straight days. During this time, I'll be admitted to Johns Hopkins, monitored closely, and given a number of prophylactics (anti-fungal medications, anti-biotics, anti-virals) in preparation for my hospital discharge. I'll be discharged from the hospital on the 5th day in order to continue treatment as an outpatient. It sounds a bit counter-intuitive to be released from the hospital with no immune system, but statistics show that a person is much more likely to catch an anti-bacterial resistant strain of infection, at a hospital, than anywhere else.
I'll then be seen at IPOP, a special area of Johns Hopkins set up to deal with immuno-suppressed patients, everyday for 60-90 days. The name of my game will be to avoid germs, infected people, and little kids at all costs. I'm completely stocked with respirator masks as well. The danger with any immuno-suppresive form of chemotherapy is infection during the time of immuno-suppression. Fevers are a very serious matter and I'll need to monitor my temperature constantly. At the first sign of infection, I'll be directly admitted to IPOP for intravenous anti-biotics/anti-fungal medication, as I won't have the defenses to fight off so much as an upper respiratory infection. It takes about 60-90 days for the bone marrow to produce a significant amount of white blood cells to that I can fight off infection on my own. Once those numbers rebound, I'll be able to leave Baltimore and continue supportive treatment in Dallas or Oakland. It takes an additional 3-5 months for my other numbers to rebound to normal. Fathers better watch their daughters on that day.
Tuesday, June 7, 2011
Playlist for my spirits
Music has always been the soundtrack to my life. With that being said, I thought I'd share some of the music I'm listening to these days to help my mood. I compose them over at 8track.com as they let you upload your own songs as long as they are not bootlegged or unreleased.
Enjoy,
Bryant
Enjoy,
Bryant
Saturday, May 28, 2011
How I feel / What it's like living with this disorder.
This condition is a strange one as there are several different aspects that affect my daily life. First things first, I don't feel sick or ill. Being aplastic anemic means I'm exceptionally low on blood cells (red blood cells, white blood cells and platelets). Red blood cells carry oxygen from the lungs to the muscles in the body, white blood cells prevent infections and fight disease, and platelets stop bleeding and prevent excessive bleeding. Living with this condition means: fatigue, reduced ability to fight infections and an increased risk of bleeding. None of those symptoms necessarily equate to me feeling bad. That's probably the strangest thing about this particular disorder. I feel relatively normal, especially because I was in relatively good (who are we kidding...) excellent (closer), bullet proof tiger shape.
As a result my day to day life is only affected by the precautions I must take to ensure that I do not become sick. These precautions include, but aren't limited to: washing my hands 10+ times per day, wearing a mask in public, avoiding touching door handles, not smelling flowers, not eating raw foods of any kind (fruits, veggies, greens), avoiding people in general, not making out with women (a sad day for the greater sex). The tough part about the day to day is feeling like an isolated shut-in. I realize it's temporary, but these are the things that I struggle with more than any physical illness.
I will make it through this because of the wonderful support, love and attention provided by my friends and family.
As a result my day to day life is only affected by the precautions I must take to ensure that I do not become sick. These precautions include, but aren't limited to: washing my hands 10+ times per day, wearing a mask in public, avoiding touching door handles, not smelling flowers, not eating raw foods of any kind (fruits, veggies, greens), avoiding people in general, not making out with women (a sad day for the greater sex). The tough part about the day to day is feeling like an isolated shut-in. I realize it's temporary, but these are the things that I struggle with more than any physical illness.
I will make it through this because of the wonderful support, love and attention provided by my friends and family.
Friday, May 27, 2011
My Story
A little background about myself and how this all came to be. I've been a relatively healthy guy for my entire life. I typically got sick about once every year and half or so. In 2009, while I was with Kaiser Permanente, I went in to get some routine blood work done for a physical. My platelet count came back a little on the low side of the normal range (140). The Dr mentioned this but told me it was nothing to worry about, so I really thought nothing of it.
Fast forward 1 year later. It's thanksgiving of 2010 and I get more routine blood work done. My platelet count came back very low (50). The Dr's wanted to do a bone marrow biopsy in order to see if anything was wrong with the major component of blood creation within my body. If you haven't had a bone marrow biopsy, a large needle is inserted into your back, while you lay on your stomach. Through this needle they extract bone marrow and a small piece of bone. At that point, it was believed I could have a form of leukemia, lymphoma, or some other sort of scary blood disease. I had the biopsy done in January of 2011 and it came back as negative for any sort of blood cancer. No irregular cells were found. Phew!! I can go back to living a normal life, or so I thought...
In April of 2011, I began to find it increasingly more difficult to complete my boxing and muay thai classes. It was a very strange feeling. I didn't feel winded, but I did experience muscle fatigue. It was almost as if the oxygen wasn't getting to my muscles. I could feel lactic acid build up in the my muscles after a relatively small amount of exercise. I didn't think much of it, until two weeks later, when I experienced a blurred spot, in the center of my field of vision, in my right eye. Shortly after that, I experienced a smaller blurred spot in my left eye. At that point, I got really scared, but luckily I had an appointment the next day with a retinal specialist.
I went to the Retinal specialist the following day and they found that I had significant bleeding in both retinas. I was experiencing blurred vision because some fairly significant pools of blood had formed in my eyes and were affecting my ability to see clearly. The million dollar question then became, "What is causing the bleeding?" I was referred to a general physician the very same day. I was examined head to toe by a very good general practitioner who then referred me to the Alta Bates Hospital Emergency Room for blood work. He mentioned that was the only place that could get the work done and turned around the same day. I went to the emergency room and had my blood tested. Once the results came back I was admitted immediately. For anyone familiar with CBC blood count numbers, my hemoglobin was a 3.2, my WBC count was around 2, and my platelet count was 5. My room was flooded with ER nurses who wanted to see the guy who actually walked in with those numbers. I was almost walking dead at that point. After I was admitted and checked for spontaneous hemorrhages I was immediately given a blood transfusion (4 units of Red Blood Cells and 1 Unit of Platelets). I was given 2 more units of Red Blood Cells the following day and another unit of platelets the following day and 1 additional unit of Red Blood Cells the following day.
I spent a week in the hospital having various tests done with an additional bone marrow biopsy for good measure. Luckily, to this point they have not found any malignant cells, the problem is there weren't many cells at all. I was diagnosed with Severe borderline Very Severe Aplastic Anemia. The term Aplastic Anemia means "failure of the bone marrow". Many things can cause it, but it's very rare for an exact reason to be determined. 70% of cases are a result of the immune system becoming confused and attacking the bone marrow stem cells that create blood and inhibiting those cells from creating blood. I currently am at about 5% of the blood production of a normal human being. Lucky for me, I'm in great shape and the body can adapt and run on less blood than would be found in an ideal situation. Score one for Bryant.
Fast forward 1 year later. It's thanksgiving of 2010 and I get more routine blood work done. My platelet count came back very low (50). The Dr's wanted to do a bone marrow biopsy in order to see if anything was wrong with the major component of blood creation within my body. If you haven't had a bone marrow biopsy, a large needle is inserted into your back, while you lay on your stomach. Through this needle they extract bone marrow and a small piece of bone. At that point, it was believed I could have a form of leukemia, lymphoma, or some other sort of scary blood disease. I had the biopsy done in January of 2011 and it came back as negative for any sort of blood cancer. No irregular cells were found. Phew!! I can go back to living a normal life, or so I thought...
In April of 2011, I began to find it increasingly more difficult to complete my boxing and muay thai classes. It was a very strange feeling. I didn't feel winded, but I did experience muscle fatigue. It was almost as if the oxygen wasn't getting to my muscles. I could feel lactic acid build up in the my muscles after a relatively small amount of exercise. I didn't think much of it, until two weeks later, when I experienced a blurred spot, in the center of my field of vision, in my right eye. Shortly after that, I experienced a smaller blurred spot in my left eye. At that point, I got really scared, but luckily I had an appointment the next day with a retinal specialist.
I went to the Retinal specialist the following day and they found that I had significant bleeding in both retinas. I was experiencing blurred vision because some fairly significant pools of blood had formed in my eyes and were affecting my ability to see clearly. The million dollar question then became, "What is causing the bleeding?" I was referred to a general physician the very same day. I was examined head to toe by a very good general practitioner who then referred me to the Alta Bates Hospital Emergency Room for blood work. He mentioned that was the only place that could get the work done and turned around the same day. I went to the emergency room and had my blood tested. Once the results came back I was admitted immediately. For anyone familiar with CBC blood count numbers, my hemoglobin was a 3.2, my WBC count was around 2, and my platelet count was 5. My room was flooded with ER nurses who wanted to see the guy who actually walked in with those numbers. I was almost walking dead at that point. After I was admitted and checked for spontaneous hemorrhages I was immediately given a blood transfusion (4 units of Red Blood Cells and 1 Unit of Platelets). I was given 2 more units of Red Blood Cells the following day and another unit of platelets the following day and 1 additional unit of Red Blood Cells the following day.
I spent a week in the hospital having various tests done with an additional bone marrow biopsy for good measure. Luckily, to this point they have not found any malignant cells, the problem is there weren't many cells at all. I was diagnosed with Severe borderline Very Severe Aplastic Anemia. The term Aplastic Anemia means "failure of the bone marrow". Many things can cause it, but it's very rare for an exact reason to be determined. 70% of cases are a result of the immune system becoming confused and attacking the bone marrow stem cells that create blood and inhibiting those cells from creating blood. I currently am at about 5% of the blood production of a normal human being. Lucky for me, I'm in great shape and the body can adapt and run on less blood than would be found in an ideal situation. Score one for Bryant.
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