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      12-09-2011, 04:22 PM   #312
Nick@aep
Team Zissou
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Drives: Past: E92 335i 6mt, 996 GT2
Join Date: Jan 2008
Location: Orange County, CA

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Heres my long late update with my battle including some info about a foundation that I've created to help fellow cancer patients afterwards the update-



Heres the short story from the last couple months. I suppose maybe I should just paraphrase the entire situation as a small cliff notes without people to read 18 pages-

(Note: November 2009 Weight 200lbs, 6' which I had been going to the gym very often that I felt that I was at my best health in my life... I later find that my health literally saved my life.)

1. in November 2009- I started feeling sick and I kept going to the doctor, but there wasn't anything too serious (that I though...) I managed to manage it and I felt great about a full month until ~dec. 20th and I kept getting fevers, and they'd go away, and I went to the doctor and they pricked my finger and they claimed that I had Mono. I felt better from that given that it would still have not been great than the truth shows up...

2. for the next ~10 days while I dealt with my "Mono Dx" so I kept it easy, but I kept thinking... This can't be right unless this is how Mono is since I didn't feel great since I just laid down non-stop, and it came down to Dec. 29th-

3. Dec. 29th, It was time for the ER because I couldn't breathe well, and I was not very excited going to the ER. I must have looked pretty terrible since I didn't wait more than 2 seconds after I walked into the door, and straight into a glass room and they right away took my blood and my vitals. It seemed nearly instantly when I was transferred to a full out patient room, and I still remember saying... "Wow, this room has a giant TV, why would I watch TV?" I kept asking nurses and doctors if I 'would be able to go home tonight?'

- "We'll see..."

Clearly, they put me on oxygen and I was never told that I was about to be medically induced into a coma...

4. Early March '10- I finally wake up from the coma and I was severely confused and fighting back all the insane hallucination dreams in the past 2 months since I had no where I was. I remember asking... "was I in a car accident?"

(Note: 2- I was non-stop connected to several IVs for fluids to help me heal up and my weight blew up to 265lbs which was all from water weight.)

- It never occurred to me that I was not in the same room until I was finally told that I was transferred to a different hospital. After the whole month, I was finally put into a wheelchair and I was being pushed around the hallways, and I saw a sign above the hallway where I came from... It said "Cancer (etc)"... I first thought, Maybe they must not have enough rooms open, so I thought- "This is not for me... I dont have cancer!" I was yelling at my friends. Thinking back, they already knew that, but I had no idea still.

- I finally kept getting irritated that I had no idea what happened to me. I finally heard that I was admitted to the hospital for- (A.R.D.S, and MRSA), and then on top after days after, I was diagnosed of (Acute Lymphoblastic Leukemia Pre- B) I clearly heard that my first chemo treatments started ~ Jan. 4th '10 while I was in a coma and I was brought into remission during march after several marrow tests. It seemed that I had already fought off the extra diseases (ARDS, MRSA) which were more fatal than the leukemia at the moment. I was able to hear slightly after I woke up from the coma, but by the time I was finally told about my health that I had totally lost my hearing and I had to read everything which sounded like a complete nightmare than real life that I couldn't understand anything.

- I am still completely bilaterally hearing loss even today. I can catch random bits and sounds but nothing sounds like anything, but it just confuses me until I look around to see what's causing the noises. Obviously- I can't hear any voices or anything. I can gather voice sounds, but most of it sounds like I'm in the peanuts, like Charlie Brown if you can remember that non of the adults have voices but only mumbling/muffling sounds. Thats basically as close I can explain it since I can't hear anything.

(Note: #2- April '10, My Weight was now at 115lbs and I was so frail that I couldn't even lift blankets off me, or even moving my legs. It was literally bones and skins.)


- I was finally discharged from the hospital after I was persistent that I couldn't handle being in the hospital for 5 months and I claimed that I would be able to help myself at home. I worked hard to start to learn to walk again and some muscle therapy and within 3 weeks, I was able to stand up and walk around carefully without falling down or getting hurt. everything continued with that plan and I worked on my exercising and I kept walking up and down the stairs in my house and even with a walker since I did not have the strength to walk around much, but it finally worked out.


The Second half of 2010-


I continued being treated with chemo very often while I kept exercising hard to gain my weight. Around in June '10, I needed an eye surgery for my right eye which I could not see a single thing through it which I hoped only some eye drops could have fixed it...

I had a vitrectomy surgery which they basically put me down and they basically put some needles through my eye and draining the fluid, and refilling it to clear all the cloudy issues that I couldnt see through. I was able to see better within a month, but I felt that something wasn't right. I now cannot see well through the middle of my vision in that eye that I had checked by several doctors that would cause an extra surgery, but I turned it down, and I'm still hoping that it'll naturally heal until my last resort is the surgery even at this point.


January 2011-


I was then diagnosed of CNS leukemia which is not a separate cancer type, its just one of the portions that can be stricken from A.L.L. I then instantly went and had a brain surgery that installed a reservoir under my skin on the top of my head so that chemo could be treated from there which it connects to a brain reservoir that holds the spinal fluids.

This is the point when I absolutely needed a Bone Marrow Transplant (BMT) or Stem Cell Transplant (SCT). I kept asking if this transplant was really necessary and I did my research and I kept talking with the doctors and I was eventually told this... If I did not do the transplant than I would mostly not survive.

- I was lucky to find that my youngest sister was 100% matched with me out of my 3 sisters. I then started some extreme intense chemo in March '11 and I totally lost my hair which was probably the 4th time at this point.

I was being prepped for the transplant, and then the time comes up in the first week of April '11 which included extra chemo to get everything ready. The doctor board had finally decided that the Stem Cell Transplant was the best possible option for me. The entire Bone Marrow Transplant is fairly old since the 1950's, but the Stem Cells treatment was started in the mid '90s when I was 10, but I was not worried about it. I basically was in the hospital for a full month and being watched non-stop since it was not a simple procedure and I felt terrible for most of it. I basically went on walks in the hallways which was a big point to exercise without laying on the bed.

- Clearly, the recovery was not simple at all and the specifics and rules that I needed to abide to be safe which would most likely take pages, but you'll have to trust me that the first 100 days of the transplant that was terrible.

The last 2 months-


I randomly started getting pains everywhere including my legs and I was put on pain meds that I've never taken for anything in my life which I've always been against any unneeded meds, but my pain was so bad, that it was my only option. I went and got MRIs and Xrays and I was close getting a femur biopsy if cancer had stricken my bones and then, I got an option with my legs and it seemed that my bones had caused issues that I may need a hip replacement after so much chemo and steroids, but I was lucky to find that my bones were fine.

Of course knowing myself about being against unneeded meds, I maybe took the meds for 4 days or so since it made me too tired and I was wasting time. I never took them again, and I fought through the pain and I somehow managed to fight through the pain and it finally went away on its own.


Next, I again felt completely uncomfortable and I didnt feel well to eat or anything, and I went to the hospital checked and they gave me a few days to see how I feel since my next scheduled appt. was the following week and I still felt terrible. They had to admit me how miserable I was. I was so dehydrated and it was nearly impossible to put in IVs in my veins and the IVs kept popping off and they became fairly painful since my veins couldnt flow the fluids at all. I eventually needed a central (PICC) IV into my bicep which is my 6th one since they are a huge PITA. I then had to cover my arm to take showers, again. Installing this IV is actually surgical procedure since it did not work on my left arm, so they luckily got it work on my right arm. I felt terrible for the first few days and I was only drinking soup broth without any real food.

The main point of this hospital visit is that the doctors found that I was causing fo (GVHD | Graft Versus Host Disease) that is when a transplant donor cells can attack my own organs. This entire situation is extremely fatal if not handled asap. I was lucky that my first symptom was a serious rash, and many issues in my organs, but I was put down on some serious steroids and a load of anti-rejection meds to fight it back since a lot of the meds were very uncomfortable like most things.


The Chemo Redux


I was not exactly interested posting more info about chemo unless it confused the story since I had cancer in my spine for this entire year that is a serious issue. I was cleared in remission in my spine back in March '11, just before my transplant since most issues will require recurring treatments to keep it in remission that I was aware that it could take up to a year, or so. In May '11, I had another relapse in my spine and I said... (WTF, are you kidding me?) I went back into chemo around every 2 weeks - 3 weeks. It brought me back into remission. Of course, ridiculously...

I then had my 3rd relapse which is ALL for my spine since luckily my marrow issues has been locked down in remission from my Stem Cell Transplant and it is still checked very often and it has been marked being a 100% successful transplant and the chimerism testing (this checks my blood to match in my original cells + my donor cells which the entire point is to make sure that all the donor cells have replaced my failed cells, and it proved that my Sister's cells have taken over my entire system and there is absolutely nothing left of me, and only 100% of her cells that is literally what saved my life at this point.)

- I had another chemo treatment while I was in the hospital into my little brain reservoir which you couldn't imagine what its like having a needle shot into the top of your head into a rubber type reservoir under the skin. I'm used with it at this point, but its just the territory until my spine is totally clear. At that point, I'll be going in to have the reservoir removed. My spine is basically totally clear since a very minute amount of cancer cells are found but my doctor is being very persistent to make sure it wont come back. I'm getting fairly close to be done out of the spinal cancer issues.


- I was finally discharged from the hospital yesterday after, again, being persistent that I was basically sitting around and walking around since I felt great, but I'm just taking a ridiculous amount of steroids and anti-rejection meds to make sure the side effects from the transplant, but it seems to have totally gone away.



As a note, I tried to post most of the points since the entire story would take another 18 pages. I'm fine with answering any questions about it, if anyone wants. At this point, I'm basically just working hard with my hearing loss so I can hear again and continue my life which is more difficult than cancer since I've beat that down, now. So- Basically, I feel great now for most, minus being deaf still, but its better than issues. I'm definitely much more comfortable without receiving chemo VIA IV which is very miserable. [up] for transplants. []

_________

Gentlemen and Ladies in regards my Drive ALL Out Foundation for the latest-

The Foundation was created last year that I had been planned to grow it to help fellow young cancer patients. Regardless my health changes since early last year until now that I'm now heathier than before so I can finally spread the word for the foundation and raising awareness. I was in the hospital for ~2 weeks last month since I didn't feel well for the first few days while I was there but, of course, they wanted to monitor my vitals, etc because I have probably clocked in maybe 6-7 months staying in the hospital since day 1 and it was enough by the time I was discharged from the last visit.

I very rarely ran into patients walking around the hallways since they'd usually staying hid in their rooms or even their age. I sometimes would run into mainly elderly people with their family or friends sitting around. Obviously, I wasn't exactly interested becoming social from my hearing loss thats still difficult with that. I spent most of my time going on walks through the hallways so I wouldn't cause extra atrophy from laying on the bed all day since I'm still fighting back atrophy from last year still.

During this hospital admission, I was walking like everyday and I looked over my shoulder since I didn't notice that someone started following me for a walk and a kid introduced himself, and he's 21. It was interesting that someone actually came out of their room. I let him know that I couldn't hear anything that he was saying but I grabbed something for him to write down. I first assumed that he most likely was fighting maybe lymphoma or leukemia or like myself since I wouldn't be able to tell that he hadn't lost his hair since mine grew back since months back. I clearly wasn't interested to pry into peoples lives unless it was offered. He told (wrote) that he has 'aplastic anemia' (quotes that I haven't heard of it before this point). Just only its name proved that it seemed serious or most likely rare. Obviously, I didn't want to start a discussion until I finished my walking and I googled it to see the deal what he has. It has a quite amount of treatments for it including a bone marrow transplant to treat it since he also mentioned that he will need the transplant. It also seems that there are risks that some people become diagnosed of leukemia after aplastic anemia. Either way, I was in the hospital for a while and I played foosball in the game room on my floor, and.. I didn't exactly getting my ass kicked playing including my hearing loss, but I didn't lose too bad, but it was better than doing nothing in the hospital.

The point of this story is that I have finally realized that my health has improved much since my transplant in the last 8 months so I can finally push the foundation to help people since the goal is to help young patients and their families who will be receiving donations from fundraisers that are being run through events including-

This section have been drawn from Audizine.com-
All Anthony @ Audizine.com's generous offer through fundraisers for my personal battle from start that moved up to Drive ALL Out Foundation including the '11 Audizine Calendar. I have been very grateful from offers for fellow AZ members to holding fundraiser events including the summer GermanAutoBash via JRiddle11. In the recent fundraiser that was created by Kneel (Neil) which was a West and East event called "Avantober Fest"

From this point- I have been putting together plans to raise awareness and building fundraisers for the foundation to help people. I am positive that making the foundation successful helping other people by making it fun for people following it with my plans. I graduated from film school years back and I have a lot perks using the tv studios for interviews and including using the film school equipment for making viral videos that will of course include auto videos to help the cause.

At the moment- The current ( driveallout.org ) Website is being revamped into a whole new site.

If anyone who uses facebook or twitter (since I personally don't follow many social networks but I find them helpful for the foundation)- I would be greatly appreciated if anyone who uses any of those sites for-

www.facebook.com/driveallout
www.twitter.com/driveallout

Of course, reposting to help spreading the word on your personal pages would be great! I'm also very welcome for any recommendations that could help me with it while we're putting together sponsors for the foundation along it gets going.



Nick

Last edited by Nick@aep; 12-09-2011 at 04:28 PM..
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