That is right. After 13 days or so, I got out of the hospital yesterday. As much as I love my nursing staff, and appreciate my treating doctors, it is quite nice to be, at the house, with my family. Staying in the hospital presents several challenges, that require preparation, both mentally and physically. I'll save you most of the details, but it's definitely not for everyone. When I say that, I really mean that things like boredom, attitude, and lack of perspective, can drag a person down quickly. Personally, I haven't met the inside of a hospital that could hold me. I flexed and busted out of there. It's definitely not the first time I've had to flex and bust out of somewhere, but it was probably the scariest for them. I can't imagine they've seen someone, so sick, with muscles that ripple so hard, the nurses thought they were watching a Jurassic Park replay on cable.
People have been asking me if I've selected a treatment, and if so, what's the prognosis. I still don't have an answer for you yet. I'm currently undergoing a pill regimen of Cyclosporine, an immunosuppressive drug, designed to help suppress my immune system, so my bone marrow can produce enough blood cells to correct my anemia. This medicine requires 6-7 weeks for maximum benefit. I'm now at week 5. I wasn't sure that this pill regimen really constituted a treatment, but I've spent enough time in the hospital, more time in patient than my previous regimen of chemotherapy, to say this definitely constitutes a treatment. My Doctors, here in Dallas, are not very enthusiastic about this pill regimen, while my specialist, at Johns Hopkins, seriously believes these pills will help my numbers rebound. Specifically, because they've seen issues, with white blood cell production, surface as a result of viral infections. I've had the influenza and another viral infection since I've returned to Texas. At the new year, I had 800 ANC (i.e., I had 800 white blood cells that are worth a plug nickel). By the time I was hospitalized, for the flu, 4 days later, I was at around 250-300. By Valentines day, I had 30 (ANC).
Obviously, watching my ANC, white blood cell count, swan dive from a semi-respectable 800, 1000+ is considered normal, to 30 was a bit disconcerting and worrisome. However, I've had lower numbers, and it's all about perspective. I spent 3 whole weeks with 0 at one point. While it's still too early to tell, I noticed that on the 15th, I was up to 40 (ANC); On the 16th, I hit 70 (ANC); and on the 17th, I hit 100 (ANC). Additionally, my red blood cells went up, a little bit, as well as my overall white blood cell count. I get my numbers checked again on Friday, and I'm really excited to see if the upward trend continues.
As far as my feelings go, it's difficult to remain even keel. I'm prepping for a long difficult road to recovery, so it's been hard to allow myself to believe that I could potentially recover, by taking a pill, when the next level of treatment is so much more intensive. I'm of the mind that this is a classic prepare for the worst and hope for the best scenario. If you have any feedback/suggestions, leave a comment, or send an e-mail.
Tuesday, February 18, 2014
Thursday, February 13, 2014
Newish Music
I put together this playlist, because I'm just loving some of these tracks right now. Most of it isn't Trap music, and some of the lyrics are NSFW, so I suggest you plug in your headphones.
Wednesday, February 12, 2014
Welcome Back
I'm not sure of you how many know this, but I don't have a functional immune system. If I have a fever that reaches 100.6, it's what is referred to as a "medical emergency," and I'm required to go to the hospital. When I go to the hospital, I'm normally there for at least 8 days: 2 days to get the fever down and 6+ days to figure out what it is, so they can prescribe me the correct medicine. Since I don't have the ability to fight off anything on my own, everything is on the table. Weird bacteria, strange viruses, and worst yet, common molds. Every fever related admission to the hospital is russian roulette.
It's Super Bowl Sunday, and I wake up with a fever of 100.6. Bullshit. Fever be damned. I'm watching this game. I'm glad, for all my 49'er and Bronco fan friends, at least you're not Cowboy fans. So the game's over and this fever isn't going away. Fuck! With each fever, comes the inevitable, personal, tug of war between my ego and the acknowledgement of my, very real, vulnerability. I never want to acknowledge my vulnerability. I've always had issues with being vulnerable, and by extension, sharing any perceived weakness. I've always seen myself as a grounded, strong individual. I take pride in carrying people's weight, problems, issues, and providing sage advice. I have an unwavering confidence that I have all the resources, at my disposal, to come out of this, on the other side, relatively unscathed, having learned even more lessons of life and having gained more perspective.
Something I have noticed, is that while I don't doubt this, I've been experiencing some issues relating to people projecting doubt, upon me, as if a relapse is some unscalable wall. I'm going to let you in on a little secret. This is just a hurdle. Life's easy and it's great, until it's hard and, at times, arduous. This is just something I've always treated as fact, and I don't sit around and worry about the unknown. As someone who's had previous issues with depression, I've learned that's not where you want to go. Besides, where's the utility in that? I feel as though the worrying is often times much worse than the actual things we must endure. So I'd ask that you all don't worry about me, don't doubt me, and don't pity me. Just believe in me, and I'll take care of the rest.
Thursday, January 9, 2014
Relapse??!!!
Hey Friends and Chosen Family,
It's been in a while since I had any news worth sharing, but I recently found out that I am in the process of experiencing a relapse of Aplastic Anemia. Admittedly, it sounds absolutely horrible, and I'd wish it on no one, but there's a strange comfort associated with this for me. There are more pleasant experiences out there, however life's hardships often provide us with the most perspective. I'd liken it to taking a really life changing trip somewhere, only if the trip involved you fighting for your life, and spending way too much time dicking around on a kindle fire.
What does this mean?
Basically, it means that I'm dependent on transfusions, for the short term, until I can select a treatment that will allow me to create enough of my own blood cells to sustain a body that could only be compared to a young Rick Flair.
Is the treatment dangerous?
In a sense, yes the treatment is dangerous, but it's nothing compared to choosing not to treat the affliction. Also, if you've ever seen me, shirtless, during "pool season", you'd know that dangerous is a relative term. Have you ever seen a diamond cut in half by someone's abdominal muscles? I have. Shit tons of times, and let me tell you something... it's dangerous as shit.
What can you do?
As you've probably read, in previous posts, this affliction is more an issue of avoiding germs, avoiding being sick, and waiting. If you'd like to help out, text me, e-mail me, and Facebook me up. I have a bunch of time on my hands, I'm fairly isolated, and I love stories. Confide, Share, Be a Pen Pal, and Allow me to live vicariously through you. You'd be surprised how much I can hold, then again, maybe you wouldn't. Regardless, that sense of connection is very important to me, so if you're reading this, you're already in, and that's all I really require.
It's been in a while since I had any news worth sharing, but I recently found out that I am in the process of experiencing a relapse of Aplastic Anemia. Admittedly, it sounds absolutely horrible, and I'd wish it on no one, but there's a strange comfort associated with this for me. There are more pleasant experiences out there, however life's hardships often provide us with the most perspective. I'd liken it to taking a really life changing trip somewhere, only if the trip involved you fighting for your life, and spending way too much time dicking around on a kindle fire.
What does this mean?
Basically, it means that I'm dependent on transfusions, for the short term, until I can select a treatment that will allow me to create enough of my own blood cells to sustain a body that could only be compared to a young Rick Flair.
Is the treatment dangerous?
In a sense, yes the treatment is dangerous, but it's nothing compared to choosing not to treat the affliction. Also, if you've ever seen me, shirtless, during "pool season", you'd know that dangerous is a relative term. Have you ever seen a diamond cut in half by someone's abdominal muscles? I have. Shit tons of times, and let me tell you something... it's dangerous as shit.
What can you do?
As you've probably read, in previous posts, this affliction is more an issue of avoiding germs, avoiding being sick, and waiting. If you'd like to help out, text me, e-mail me, and Facebook me up. I have a bunch of time on my hands, I'm fairly isolated, and I love stories. Confide, Share, Be a Pen Pal, and Allow me to live vicariously through you. You'd be surprised how much I can hold, then again, maybe you wouldn't. Regardless, that sense of connection is very important to me, so if you're reading this, you're already in, and that's all I really require.
Wednesday, January 18, 2012
6 Month Follow-up
Hello! I've recently completed my 6 month follow-up appointment at Johns Hopkins. The results were nothing short of fantastic. I now have completely normal White Blood Cell and Red Blood Cell counts (WBC 3k, ANC 2k, HGB 14.9, HCT 41.3). My platelets are still rebounding at a paltry, but very well appreciated 36k. As long as I don't suffer any crazy car accidents or nasty cuts I should be fine. Lucky for me, I'm basically as hard as a diamond plated piece of steel.
I've come a long way last year. I lost my mother to liver disease and stared down my own mortality. I'm grateful to be no worse for wear and in the position to do just about anything. I'm blessed to have wonderful people in my life to lean on. Without them, this recovery wouldn't have been possible. I'm now currently back in the Bay Area and getting readjusted to the lifestyle here. Occasionally, people ask me, "Bryant, what'd you learn? How did it feel to be out of control?" I'd say that throughout all of last year, I was only in control of two things: my diet and my attitude. I sincerely believe those two things make all the difference.
I've come a long way last year. I lost my mother to liver disease and stared down my own mortality. I'm grateful to be no worse for wear and in the position to do just about anything. I'm blessed to have wonderful people in my life to lean on. Without them, this recovery wouldn't have been possible. I'm now currently back in the Bay Area and getting readjusted to the lifestyle here. Occasionally, people ask me, "Bryant, what'd you learn? How did it feel to be out of control?" I'd say that throughout all of last year, I was only in control of two things: my diet and my attitude. I sincerely believe those two things make all the difference.
Friday, August 12, 2011
Response!
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!
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!
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.
Subscribe to:
Posts (Atom)