Kicking Cancer

Getting Better....

2008-11-18T19:57:00.002-05:00

Sorry for the lack of updates.

The scans of course showed NO SIGNS OF LYMPHOMA. So I am officially in REMISSION. I expect this to be the FINAL REMISSION and I will never have to deal with this again.

My blood counts are near normal. My energy level is actually very good but I am still taking it easy. My taste is back (for the most part), but I still get a little nauseated from time to time.

Tomorrow I will probably have what is my last appointment at MD Anderson. I feel pretty sure they are going to give me the OK to be released. It feels great to know I will have my life back. At the same time (even with the hurricane) there are things and people that I've met in Houston that I will really miss. I'm also going to miss the weather because it's been in the 70s here.

But I came to kick cancer again and that is what I have done. Mission accomplished. I know I will face challenges in life ahead of me. But I can honestly say I live with very little fear because I've been through so much.

I still get people commenting on my "why NOT me?" post from months ago. I heard everyone say that attitude can have so much to do with a cancer diagnosis. Part of the reason I wanted to have this blog is to prove that. In hindsight, I look at how I handled everything and it's no wonder that the outcome is as good as it is.

The day I die, I have no idea what my legacy will be on this Earth. But one thing is for sure: it wasn't my time to go. And if it wasn't my time to go, that means I have a bright future ahead of myself. This is only the beginning.

I want to say "thank you" again to those who have showed you cared and reached out to me. You have made me feel that I wasn't going at this alone. You should realize that you too are a big reason why I became a two time survivor.

2 weeks out of hospital...

2008-11-06T12:05:00.002-05:00

If you have followed any other cancer blogs, you see there is a point where there aren't as many posts. And this is a good thing. I haven't been writing a lot because there hasn't been much to say.

My blood counts (whites, reds, platelets) all remain low. But not low enough for transfusions or anything like that. It just appears my body is taking it's time in making new blood. I'm still in Houston and will most likely stay here until the counts are normal.

Tomorrow, I will update the blog as I get the results from all of scans and see my transplant doctor with an update on what happens next.

I'm doing much better than I was. I still get nauseated from time to time and sometimes when I smell food or see food on TV, it makes me nauseous. This is just something that takes time.

My energy level is getting better too. I can sit in a chair without having to rest my head!

I'm expecting great progress in the coming weeks. I'm not having as many ups and downs and I can feel all that chemo slowly working its way out of my body.

No brakes...

2008-10-31T18:32:00.003-04:00

Well, it appears the truck has no brakes. It just continues running over me at full speed, leaving me always feeling beat up.

Today is 21 days after transplant. I thought I would be feeling good by now, but not yet. I go between feeling terrible and not so good, with the occasional moments of feeling OK. It still hasn't hit me what my body has been through and that I am finished with the treatment. I look pretty sick too. Dark circles under my eyes and finally lost my eyebrows and most of my eyelashes. It's just part of the process.

But, I just try to stay focused on the future... and how GREAT I will feel once my body has a chance to bounce back. I'm really not going to take anything in my life for granted for sure. (how many times have I said this on the blog?)

My white counts were actually in the normal range today. Reds and platelets just kind of laying low and hanging out that way. But I should have a bounce soon.

When I went to the doc this morning, my temp was 100.2. 100.5 would have sent me to the ER. They took it 2 times later and it was different both times. And when I take it at home--same thing... my temp seems to go up and down for no reason. But it hasn't stayed at the 100.5 range long enough and hoping it doesn't so I won't have to be readmitted. Each day truly is like a rollercoaster ride.

Monday is nothing but tests all day long.

Ups and Downs

2008-10-29T15:51:00.004-04:00

I've been having to go to the doctors office every couple of days. I went this morning.

Everything was going uphill until yesterday afternoon. I started to feel bad again--kind of like that "run over by a truck feeling." This morning it was hard to wake up.

But I haven't been running a fever and show no signs of infection... so the APN (advanced practitioner nurse) overseeing me thinks it's just part of the process. The minute I have a fever, I would be re-admitted back to the hospital.

So it's kind of like a bumpy ride--take a step forward, take a step back. My red cells and platelets aren't dropping like they were, but still low. And my whites went way down, but they should come back up again. It's a long process. Today is 19 days after transplant, so it's still the beginning.

Next APN visit is Friday (Halloween), and then next Monday, I have all my scans again. I was already in remission before the the transplant, so this is just going to reconfirm everything I already know...

Chest Line REMOVED !

2008-10-27T14:24:00.002-04:00

Just about 1 hour ago, I had my chest line removed. It was very simple... the nurse told me to take a deep breath and with a simple tug, it was out.

If you have ever been a cancer patient, you know the feeling that comes with having the line removed. It's really the first sign that you are becoming "normal" again--or a non-patient.

I've had to cover the line with Press and Seal, not get it wet, have it hanging out---in addition to flushing it every day and changing the dressing once a week. No more! The line is out and I am free.

My blood counts remain very low, but not enough for a transfusion. My major complaint now is that I have a terrible taste in my mouth that never goes away. It's not just a bad taste, I mean, it's terrible. Kind of like always having the feeling you've taken a sip of Windex. It should go away in a few weeks.

So I will probably be monitored in Houston closely for the next few weeks and then head to Florida for awhile. I still have very low energy and have to stay away from people for awhile until my counts normalize and my new immune system has a chance to build itself up. But all things considered, I am doing great and starting to realize I really did beat Burkitt's twice.

DISCHARGE DAY !!!!

2008-10-23T14:45:00.003-04:00

Well, I made it. I was discharged earlier this morning. 13 days after the transplant and 20 days in the hospital. That's actually about the soonest anyone is usually released.

My white counts are normal. All my blood counts will kind of be in a state of flux as my body tries to normalize itself again. So this means more blood transfusions. And of course, I have to be really careful not to get sick as this is prime time cold and flu season. My immune system is only 13 days old at this point, so if I get sick, it could be a tough fight. A year from now, I will have to get all my childhood shots/immunizations over again as I am not immune anymore.

I thought at this point, I would feel very weak and fatigued. But it's not really like that. I feel more of a weird sensation--like I am in a fog or something and everything seems a little different. This beats feeling bad or like you have been run over by a truck, but I hope I feel normal soon.

30 days after the transplant, I'm finished going to the doctors office on a regular basis. That's only 17 days away.

That is one of of the most interesting things about being a cancer patient. You are diagnosed, you go through treatment, then when it's all over, you are kind of thrown back into the real world wondering what the heck just happened over the past few months. But one thing is for sure: you don't take ANYTHING for granted in life.

Transplant + 11

2008-10-21T18:24:00.001-04:00

Overall, I'm doing Ok. Still feel a liitle rundown and pretty
nauseated (sp?). My WBC soared to 2.0 so the plan is to be discharged
on Thursday, 10/23.

Transplant + 10

2008-10-20T19:31:00.005-04:00

Great news: My WBC came in today at 0.8. The doctors expect this will continue to rise and I should be discharged probably in the next 2-3 days.

Don't get me wrong, I'm very excited to hear this news. But everything I have been through the past few weeks are still a bit hard to process. For the most part, I feel OK (no mouth sores or anything), but most of the day I do still have that "hit by a truck" feeling where nothing is wrong, just feel rundown. I thought I would be fatigued, or run down, a little, but I guess I had no way to tell just how much this would take out of me.

But there are so many reasons to FEEL GOOD. I made it through the transplant. I made it through treatment for recurrent Burkitt's. I'm NOT dead, I'm NOT dying, and I don't plan on backing my bags for heaven anytime soon.

It's only human to wonder if you are going to make it through this--I always believed that someway I would (I'm a tough guy at heart for those who truly know me). But now the reality sets in that this is just one more obstacle I have encountered to make me the person I am...

I'm also looking at the calendar... seeing it's Oct. 20 and wondering to myself--what happened the past 17 days. Where did this month go?

I always thought with such a long hospital stay, I would be itching to get out of here. But honestly, the nurses have taken great care of me and it almost feels like I'm being rushed out in a few days. ha ha It's just, you think of people leaving the hospital fully recovered, but I still have a lot of recovery to do.

The thought just hit me... I have not been off the 11th Floor of this hospital, or seen trees, or people, or anything. Wow, I really have been reborn again and will never be the same person as before this experience.

My view of the construction cranes has been OK, but I am looking forward to jumping back in the "real world" as a new man.

Transplant + 9

2008-10-19T20:13:00.001-04:00

Today, I didn't do too much but sleep.

The good news is the mouth sores have completely healed and my WBC is
up to 0.3 (over 4.0 is "normal") Still a ways to go..

I still have no appetite and vomit from time to time. But I think at
this point, the worst is behind me. I may be discharged from the
hospital later this week.

Getting more platelets..

2008-10-18T22:16:00.000-04:00

The left side. That's what platelets in a bag look like..

Transplant + 8

2008-10-18T18:01:00.001-04:00

Last night, I felt probably better than I had in sometime...

So it was no surprize when I learned this morning my white count was
up from 0.1 to 0.2. Once that goes up more, I'll really be feeling the
difference.

All day today was spent getting a megadose of Rituxian. It took about
8 hours to infuse. If you have been keeping up on the blog--you know
what Rituxuan is.. It goes after cancer cells only and isn't
considered chemo. The thought is if there were any remaining cancer
cells (even after all this) it would kill them.

So the Rituxian has left me a little weak.. But I'm so glad that no
more heavy duty drugs! Just antibiotics and that type of thing and as
needed...

I'm waiting for another blood transfusion--I'll be getting more red
cells. The platelets and reds only last a few days so you have to get
more. They should be arriving to the room anytime now. (Room service:
can you send me some blood? Ha)

Hopefully over the next few days, those stem cells will start making
blood cells of their own. It's hard to believe I have been in the
hospital for only 2 weeks--it feels like a few months.

Transplant + 7

2008-10-17T14:51:00.001-04:00

I thought the worst was behind me.

Last night, for no particular reason, I felt like death. It was
horrible. Before now, having food poisoining a few years back was the
worst i have ever felt. This topped that. Finally, I was able to go to
sleep.

This morning, I woke up feeling like roadkill. Just as if I was lying
on a highway and car tires were rolling over me going 60 mph.

Keep in mind, I know this will pass. And I know this will make me
stronger in the end. But I also feel it's my duty to be honest and
upfront about what this process is like. Trust me, I am not being
dramatic here--I'm just giving you a glimpse of the hell stem cell
transplant patients face. (and I'm a young guy that is doing well
through the process!)

I'm basically feeling the effects of all the chemo I had when the
process started. I haven't had an immune system for days now, and let
me tell you I can't wait to get it back.

I am now 7 days past the transplant... So anytime over the next few
days, those transplanted cells will finally start producing white
blood cells. The doctor tells me I'm going to have a very quick
turnaround when that happens.

Until then, I just have to stay strong... And when those ill feelings
come, do anything possible to focus on not thinking about how horrible
I feel.

Transplant + 6

2008-10-16T14:29:00.003-04:00

The past 24 hours have been quite interesting to say the least. It's kind of hard to know where to begin...

The mouth sores I had were very bad and painful. So yesterday, my nurse suggested that I take a morphine-like drug through my IV. The pain subsided a little--but I vomited several times and felt horrible.

Then, I spiked a little fever, which meant I had to be put on new IV antibiotics, and be sent for a chest X-ray, and more detailed blood tests.

I really felt horrible during this time.

During the night, the pain was so bad, I couldn't sleep. It became difficult to talk. They gave me more of the morphine drug--but honestly it didn't really seem to help any. You know you are facing a lot of pain when morphine doesn't help. That being said, I had felt worse 3 years ago when I got mouth sores then and my fever shot up.

This morning's blood tests revealed my platelets and red cells had also taken a nose dive. No wonder I felt to terrible.

I got out of the bed to use the restroom, and my heart started racing. The nurse ran my vitals again and suggested that I stay seated at all times, because if I stood up, my heart was going to start racing again. My mouth sores, this morning, were hurting worse than ever so I was given more pain medicine.

When the doctor made the rounds, he said my mouth sores were some of the worst he'd seen. Keep in mind, during the whole time, yes, I am in pain, but it seems like everyone else was more worried about it that I was.

So around 11a, I got my platelet infusion. And as I type now, I am getting my blood transfusion. A blood transfusion may seem like a scary thing, but when you are short of blood, it's about the best thing that can happen. I can now stand up and my heart doesn't start racing.

Amazingly enough, the mouth sores are feeling better. I won't have another blood test until tomorrow morning--but it looks like my body may be starting to produce some white blood cells. It could happen anytime over the next couple of days, and when I have more white cells, that means the transplant is working.

This whole process is so crazy--and such a rollercoaster ride. Yes, you feel bad, but the crazy part about it is just wondering what's going to happen next and how you are going to feel in a few hours.

But I really do think the worst is behind me. And as each day passes, it's going to get easier and easier.

Transplant + 5

2008-10-15T15:46:00.000-04:00

I've probably felt worse today than I have in awhile. My counts
cotinue to bottom out, but not enough for a transfusion.

My main problem now are these terrible mouth sores. It feels like
strep throat--but until my body creates some white blood cells, It's
not gonna heal.

The nurse keeps pushing the morphine--that it would help, so I may
have to have some before the day is over.

Good news: I still haven't spiked a fever yet, which usually happens
to patients in my condition.

Real Life "Bubble Boy"

2008-10-14T19:33:00.000-04:00

This is what "contact isolation" is all about. When I leave the room
or someone enters... This is what you have to wear (headphones and
iPod optional)

Transplant + 4

2008-10-14T16:05:00.000-04:00

I'm still hanging in there. It's amazing how slow the days go by.
Thank goodness for Family Feud, Antiques Roadshow, Deal or no Deal,
Judge Judy, etc.. Never been much of a coach potato, but that's all to
do when you are waiting for you stem cells to start making blood cells.

I did find out I have no white blood cells that can be counted. (which
also probably means no lymphoma cells left)! My reds and platelets
have been hanging in there, but I will probably need a transfusion or
two in the coming days.

Finally, the nurses are warning me at anytime I could spike a fever
from any infection. What they then do is give antibiotics and let the
fever ride itself out which could be days. Can't give Tylenol because
it can mask possible infection.

So I am hoping for the best. Making it out "good" through a stem cell
transplant is kind of like making it out good through a hurricaine--
damage is very relative.. But everyone continues to tell me that I am
really doing great so far... And while this is no doubt hell, I know I
have one heck of a life ahead of me...

Transplant + 3

2008-10-13T09:52:00.001-04:00

Today, I found out I have 0.2 white blood cells which means no immune
system. The good news is that I am probably at the beginning of the
worst part, and by the end of the week, counts will be on the upswing.
(maybe even sooner).

The nurses have told me don't worry about eating. Anytime I do try and
eat (even liquids) I vomit it up and makes me feel worse. They say
most patients don't even think about food when they are where I am
now. I must say, I am a little hungury, but it's going to take some
more time. I never really thought about how everything must be in the
right place and condition for a human being to consume food.

The past 2 days, my goals have been as simple as get out of bed and
walk around the nurses station. Or the simple act of taking a shower
which can take a lot out of you. I think I have lost about 10 pounds
in just over a week.

One day at a time. That cliché rings so true giving this situation.
All things being said, I'm actually doing very well as a transplant
patient and keeping my goals and knowing that I'm gonna enjoy life
like never before once this is all behind me.

This is a rites of passage like none other... But I wish it on no one.
The hospital and the nurses have been great and made for a much better
experience thus far...=

Transplant + 2

2008-10-12T12:18:00.000-04:00

Ok... Not to be a baby, but can I say I finally don't feel well.

It's not that I feel terrible--it's just all the chemo and all the
drugs that have been pumped into me are taking effect.

My mouth sores are kept at bay so far, but I feel as though I have a
box of chalk in my mouth.

I also found out I have a stomach bacteria which means more meds for
that and gowns have to be worn in addition to gloves and masks. The
bacteria isn't anything to worry about, it's just part of the types of
things that happen when you have a weakened immune system and you have
to deal with.

So I feel rundown. The doctor making the rounds said I will most
likely feel this way or worse for another 10 days or so. That's the
time expected for my transplanted stem cells to start bringing back
life.

I consider myself optimistic and able to deal with this whole cancer
thing with the right attitude. I don't know how someone with a bad
attitude would be able to handle it...

All things considered, I am still doing well. There are just going to
be a few bumps along the way... :-)

Transplant +1

2008-10-11T12:56:00.001-04:00

I'm doing great overall. I feel good and have good energy.

Mouth sores are trying to develop in my mouth so taking medicine for
that, but it's to be expected.

I was telling a nurse earlier--it's as if I am flying down the
expressway, going 80 miles an hour. It's rush hour and so far--I
haven't hit the traffic yet. I'm hoping I can just sail through, but
there is always the chance of a bottleneck.

So for now, I am enjoying feeling good--and hope that someway I will
luck out and miss the traffic :-)

Happy Birthday!

2008-10-10T12:17:00.000-04:00

Transplant day. It took under an hour to have my cells put back in me.
(10/10 at 10am)!

It will take about a week to 10 days for these cells to start making
new blood cells.

In between, I bottom out so the critical period starts in a few days.
I don't feel great, but I don't feel horrible either. Just hanging in
there and keeping the right attitude. Doing what my excellent nurses
are telling me what to do. It's my goal to be one of the best case
transplant patients...

No more chemo!

2008-10-09T11:35:00.001-04:00

Not to long ago, I finished the last chemo I will ever have to take.
It's called melphalan. The chemo protocol I was on was called "beam".
As the nurse came in with the bag, I said let's put the "m" in the
"beam."

So I made it through the chemo. The true test comes next week as my
counts bottom out, I lose my immune system, and my new stem cells
start making blood for me. Right now, I feel pretty beat up, but I
have felt worse...

1 day to transplant...

2008-10-09T07:11:00.001-04:00

Still hanging in there.. Thurs is the last day of chemo and Friday
transplant day. Actually woke up today feeling ok, but yesterday was
rough.

3 days until transplant

2008-10-07T21:40:00.001-04:00

The chemo is starting to get to me. But I am hanging in there. Now I
am beginning to understand why you have to be strong mentally and
physically to get through this :-)

4 days to transplant..

2008-10-06T19:50:00.001-04:00

Overall doing OK. More of the same. There are times I don't feel well,
but they usually pass after awhile.

This is me with the etoposide. Livesafer or worst enemy? It's all how
you look at it... I bag takes about 3 hours to go through my veins.

5 days from transplant..

2008-10-05T15:05:00.001-04:00

Chemo started this morning. 6am on the dot. I am due for another 4
hours tonight.

I did vomit for the first time during this treatment cycle. Luckily it
was mostly Gatorade. I am starting to get "water weight" but this is
normal.

I just finished walking around the floor the past 45 mins. I can't
leave the floor and have to wear mask and gloves when I leave the room.

I put on the earbuds for my Iphone and was jamming out to Internet
dance music. I have always loved the beat and energy behind dance
music (techno is a certain type of dance music--so it's like calling
"country" music "bluegrass" or something. Get it right, ok!? Ha)

Funny thing is--all these older stem cell transplant patients would
see me flying down the hallway (I walk fast) and would quickly get out
if my way. I had no idea doing laps in the hospital could be this much
fun...

Me 5 days from transplant..

2008-10-05T15:04:00.000-04:00

You can see I am a little puffy from the fluids and chemo. But so far
so good :-)

6 days from transplant-WRAP UP

2008-10-04T21:15:00.002-04:00

Excellent day. The chemo drug I had today I do not even feel. I walked around the nurses station (which they highly recommend) for about 30 mins today I think that helped big time.

There is a dry erase marker board in the room that has nurses names, misc info. There is also a space for patient goals/needs. I wrote my goals down as follows:

1) To be one of the fastest recovering transplant patients.
2) To keep a positive attitude throughout this entire process.

I do have a slight headache, the nurse gave me a pain pill for that.

So etoposide/cytarabine starts Sunday morning at 6a sharp. Each drug takes 2 hours for a total of 4 hours. This will be repeated at 6p. So a total of 8 hours of chemo in one day! Four days of these drugs like this: Sunday, Monday, Tuesday, Wednesday. Bring it on.

6 days from transplant..

2008-10-04T16:03:00.000-04:00

They changed my chest line out. No problems. The nurse kept humming
"That's the way I like it" by KC and the Sunshine Band. She told me
disco was very big in the Philipenes sp? Years ago. It was the best
line exchange I had had-- so that's why she kept singing the song.

The orange covered bag below is my first chemo drug "carmustine" and
is going through my veins as I type this... The next 4 days consist of
very large doses of etoposide and cytrarabine. Day before transplant
is Melephalan. Then there will be 2 doses of Rituxian. A lot of drugs!
But it takes a lot to kill off someone's bone marrow..

Admission Day: ROOM #1166

2008-10-04T00:24:00.001-04:00

Well, I have been officially welcomed into my new home, room #1166.

Earlier today, I stopped by the Olive Garden to get some carryout for dinner. I told them this would be my last REAL meal for awhile, so they hooked me up with some special soup and a bag packed with fresh breadsticks. The Tour of Italy never tasted so good.

Then around 7p tonight, I got the call that my room was ready. I packed clothes, books (mostly inspirational/positive thinking kind of books), and all my gadgets. Then, I told my temporary apartment goodbye and went on my way.

The shuttle bus has it's last run at 730p and I was able to make it in time. It's a large bus, the size of a Greyhound, but nice. Over the past few weeks, I'd made friends with Lisa, the morning driver. Lisa loves to talk and it isn't her job to just drive the bus. She has to know how you are doing, what's going on with you. She doesn't work for the hospital--just a charter bus company, but makes things better for the patients. (The passengers are usually a mix of patients and medical students). Lisa also told me she knew of another guy from Atlanta that had been at Emory and was now being treated at MD Anderson and regularly rides the shuttle.

I didn't know the evening bus driver that well. We'd never talked. As I went to board, he saw all my bags and I told him I would be in for probably 2-3 weeks, maybe a month. "You having a transplant?" he asked. He knew all about it. The bus drivers see transplant patients all the time, so it's no big deal to them.

I was the only passenger on the bus and sat in the front seat (just imagine being the only passenger in a Greyhound)! But we chatted the entire ride to the hospital. And once I made it to MD Anderson, I had kind of forgot that I was on my way to be admitted for the most major medical treatment I will ever receive.

The driver talked about how he sees so many patients that do so well and that MD Anderson is the place! Turns out he also used to live in Atlanta. He told me the story of a 21 year old guy that recently had a transplant, and afterwards, you would have never known anything had happened to him. I told him, yeah, it's gonna be tough, but that's gonna be me the next time you see me!

As I left the bus and checked into admissions, I had no fear. I thought to myself: "the ride here was so pleasant... and so peaceful". What a good experience this is gonna be...

I then found out I would be in room 1166, so got in the elevator. I pressed the "11" key. Some other people walked in and pressed the "7" key. 7-11

Over the past few years, 7-11 has always been a kind of "lucky" number for me. No joke.

Tomorrow they change out my chest line and we get the party started with the first high dose chemo drug.

Me.. 7 days before transplant...

2008-10-04T00:01:00.000-04:00

SHOWTIME!

2008-10-03T14:42:00.002-04:00

I will be admitted this evening.

Tomorrow, they will change my chest line to a smaller one and start the high dose of chemo. Different drug cocktails will go on until Thursday, October 9.

Friday, Oct. 10 is my transplant date and I will receive my stem cells back. (Kind of anti-climatic, in a way).

The most difficult part will be the following week, as my blood counts bottom out and I will have no white cells and get a new immune system.

All in all, I will probably be in the hospital for about 3 weeks.

I'm ready. I've known I would have to go through with this for months. But as it is about to happen--I have one last chance just to feel good and know I probably won't feel as good as I do now for quite sometime. It's an odd feeling.

There are people who don't make it through this procedure, but I know I'll do just fine.

I look at this transplant as a kind of rebirth--a chance to start over again at life and a chance to truly be happy and never take anything for granted. You hear that phrase a lot, to the point it becomes cliche, but for me, it's a very real concept. I'm excited about what this new phase in life has to offer.

The good thing about all of this: it's the final showdown in my 2nd battle with cancer. And it's fight I will win.

Please keep me in your thoughts and prayers. I can't wait to celebrate once this is all behind me and I have my energy back. LOOK OUT world!

Another delay...

2008-10-01T00:05:00.004-04:00

My liver blood test showed some signs of improvement, but my transplant doctor wants to wait a little more time until Friday.

Keep in mind, it's normal for your liver to be under a little more stress than usual as it tries to rid my body of the chemicals that have been pumped in me the past few months. But I'm about to get an extremely high dose of chemo (non stop for 6 days). So my doc is just giving my liver a break before hitting it really hard.

Here is a pic I took at home in Florida the last day before I left. I was actually out riding the 4 wheeler (despite my low blood counts) as I had done before starting treatment. I stumbled upon this beautiful sunset in the woods. I told myself, when times get tough when I am in the hospital for the transplant, I will think back to this image and how blessed I am to be alive and well. I thought I would share this personal image and hopes it inspires you as well...

Transplant postponed...

2008-09-27T19:09:00.002-04:00

Back in Houston now. I was supposed to be admitted either Friday or Monday.

One of my blood tests for my liver came back a little suspect--so they are going to retest me on Tuesday and decide whether to admit me then or hold off more. The chemo can be tough on your liver--but sometimes certain drugs they give you can cause the numbers to be off as well.

I'm just hoping the liver issue is a side effect of the Neuprogen shots I had to give myself to boost my white count before the collection.

Remember when I first started and my fingers were numb after they hit a nerve putting in my PIC line? That numbness lasted over 3 weeks. I learned the first time I beat Burkitt's and this time as well--when little problems present themselves, it's best to not worry about them too much. It doesn't really help. Just say a little a prayer, "it's going to be alright" and that's the best way to deal with it.

Soon, I want to write more about Hurricane IKE, post more pics I had taken, and share what the experience taught me...

Power!

2008-09-19T19:26:00.001-04:00

Made it home safely. Just got a call that power has been restored to
my place in Houston. So that means 7 days without power. Much of the
city still dark..

I'll be taking it easy and then returning early next week. I'm trying
to mentally prepare myself for the transplant. Keep in mind, once I am
done with it... It's just a matter of bouncing back (which will take a
few months). But no more chemo or treatment after this. Surviving a
stem cell transplant is no small feat, but for me, it means I get my
life back. The same life that so many others take for granted...

Homecoming!

2008-09-18T15:28:00.001-04:00

Got clearance to go home to Florida for a week... Will be admitted for
the transplant Sept 26...

Will write more later but I am so glad to be able to go where there is
power and safe water!!!

One hit wonder!

2008-09-17T11:10:00.001-04:00

Found out earlier they were able to collect enough stem cells in one
collection! They only need 5 million and I gave them 8 million.

So these will be purified, frozen, and given back to me after the high
dose chemo in a few weeks.

There is some talk about removing the chest line back to the smaller
one (standard procedure) so not sure about that...

They will probably want me to stay in town. 5 days no power, but since
the grocery stores (and some food places) are open it's not as bad.
And being 60 degrees at night (makes it 75 inside) certainly helps.

No room in the inn...

2008-09-16T17:35:00.000-04:00

I feel like I have something in common with Mary and Joesph... No
hotels with power and water are to be had...Social workers at the
hospital can't find any either. Not enough beds to admit me but I have
to stay nearby for the collection process. They say I am fortunate to
have running water (although it isn't safe to drink...)

I have better pics of the damage that I will post when power is back...

Aphreresis..

2008-09-16T15:12:00.001-04:00

So I'm done with day 1 of the blood collection process ("apheresis").
I won't know until tomorrow how many stem cells were collected. On
average, it takes about 3 days to get enough...

Here's how it works: they hook you up to a machine that seperates your
white cells, red cells, plasma, and platelets. The machine just saves
your white cells ( which contain the stem cells in them).

The process is painless and takes about 3.5 hours. If you have ever
given platelets-- you have probably seen the machine. I will try and
take a pic tommorrow.

Hospital social workers are making calls to try and find me a hotel.
It's a little bit cooler in town, but I am now going on 4 days without
power. You know how fustrating it is to lose power for a few hours.
And no one really truly knows when it will be back...

Jackpot!

2008-09-15T16:11:00.001-04:00

Interesting and unexpected news today! I found out my white blood
count is high enough to start the collection process. (my platelets
remain very low)

I don't know if I ever made it clear but they are using my cells
(auto) transplant instead of my sister. The reason is there are less
risks and it gives us a third option ( which I assure you I will never
need).

So they collect my cells, purify them ( to kill cancer cells that may
still be swimming around) then freeze them to give them back to me
after high dose chemo.

The collection process takes 1-4 days--they collect until they have
enough. The process to collect is called aphresis and I will talk more
about it tomorrow.

I can't leave Houston, so stuck with no power, but at least a cold
front is coming through so that will make it a little more tolerable.

Powerbars and Pop-Tarts

2008-09-15T12:55:00.001-04:00

Back at the hospital today. I got fluids yesterday but they are
keeping a close eye on my blood counts (which are very low). I am glad
I have my car because the shuttles and security are not running. At
least there is power at the doctors office and I was able to charge up
my phone (how I am able to blog).

The pictures of where I live don't do the damage justice. Most of the
grocery stores and gas stations are closed. Slowly, some are reopening.

I am safe. But it's not very healthy or comfortable at 80 something
degrees inside. I am getting tired of living off powerbars and pop-
tarts (and Gatorade).

They seem to want me to stay nearby so they can do the blood
collection soon. Of course, my conern is I don't want to get sick
under these conditions. All hotels within 100 miles are so are mostly
booked up.

I remember, upon coming to Houston, wondering if hurricanes hit here.
I now know.

I really hope the power comes back soon. Three days and counting seems
like a lifetime.

Seriously, I have survived a hurricane and cancer! No doubt I can
handle anything life throws my way :-)

Possible transfusion

2008-09-13T22:20:00.001-04:00

The hospital called and said they will be able to see me tommorrow
since I most likely need platelets/and or red blood cells.

The emergency room is closed but some patients were admitted and then
some like myself need blood. Hospital police are suppose to pick me up
in the morning so should be interesting to see how it goes. Not sure
how long the power will be out, I am doing good considering all things.

2008-09-13T12:52:00.001-04:00

2008-09-13T12:51:00.001-04:00

Hurricane aftermath

2008-09-13T11:44:00.001-04:00

No power for days or possibly weeks!

Ike...

2008-09-13T11:42:00.001-04:00

I survived the storm, but don't see how I can get to the hospital
today for bloodwork.. Will write more in the coming days...

A long overdue video update...

2008-09-10T22:27:00.006-04:00

Video update on how I have been doing and explaining the stem cell transplant process...

If video doesn't work, try this link http://www.youtube.com/watch?v=-hdKhdvT3E4

Another tour of duty...

2008-09-06T00:29:00.002-04:00

I don't have the energy to go into details, but wanted to let everyone know that I have made in back from the hospital again. I didn't have any complications, but I will say this was more challenging than prior treatments and may knock me down a little more, but I'm determined to get back up again.

I can't begin express my thanks for MOMMA who drove over 15 hours to be with me (as if the drive from Texas to Florida isn't long enough) but also had to deal with all the traffic from the New Orleans evacuees that were returning back home. (A bit eerie for me as I was facing cancer treatments when Katrina hit three years ago).

I FINALLY have high speed internet in my new place (I'll have to dedicate a future post to nothing but that ordeal of my internet connection woes). I hope to be posting videos again soon. I was going to post a pic from the hospital room, but quite honestly, I think if I would have people would have been very worried for me so decided not to. At one point, I had put on over 9 pounds of water weight (just within a few days) so my face became very swollen. But it quickly went away.

I'm starting to get used to the whole "bubble boy" concept... having to wear masks and gloves, lots of diet restrictions, that kind of thing. Well--I can't say it's something that I like, but it is, like everything else--temporary.

I also gave myself my first shot today (and will be doing that 2 times a day for a couple of weeks ) to boost my white count in preparation for the stem cell collection.

So I made it through the "mobilization" chemo. I'm back at the hospital Sunday for outpatient Ritixian. Good news is no more chemo until I get the heavy duty stuff at transplant time (probably end of September). And that will be the last time I ever have to have a drip of chemo in my veins.

Tough times...

2008-09-02T20:10:00.001-04:00

I'm still in the hospital. This is about the worst I have felt. But
only one more day of chemo. Tough times, but it's part of the game.
This is called "mobilization" chemo---can't imagine what the
transplant chemo is going to feel like! Despite it all, my spirits are
high, and I know I am one step closer to a complete cure.

Day 1 Recap

2008-09-01T01:23:00.002-04:00

I entered the hospital late Saturday, so Sunday I will call Day 1.

First, this treatment is a little different than the RICE I had before. I started off earlier with Rituxian. I will have 6 doses of etoposide (one every 12 hours) and have ifospmide mixed with mesna going 24 hours for 3 days. It's a lot of drugs, but still baby stuff compared to the chemo I will have as part of the stem cell transplant.

They were going to change my chest line, but going to hold off a little. They have to put in a larger line to collect blood in a few weeks.

This chemo is starting to hit me so will write tomorrow....

Back in Hospital...

2008-08-31T12:35:00.001-04:00

Back in for one more round. This will be the last round before my
blood is collected in a week or two and frozen for the "rescue" as
part of the transplant.. Will write more soon..

REMISSION!

2008-08-26T17:27:00.000-04:00

Sorry for the lack of blog updates. I still don't have Internet
service but should next week. I have been doing good...

I got the offical news today that I am in REMISSION. No signs of
cancer. This is the best news I could ever hear, but comes as no
surprise to me.

I will be admitted to the hospital again Friday for about a week. More
chemo. Then the transplant (and high dose chemo) takes place end of
September. I hope to be back to Atlanta and work by January. Let me
tell you, I am looking forward to a long, happy prosperous life.

Why more chemo when all the cancer is gone? Because EVERY CELL needs
to be killed off so I never deal with this again.

For those of you who have reached out by email, or called, or snail
mail--you have proved yourself as true friends and I am very thankful
to have such cool, caring people in my life.

Maybe I can do a video while in the hospital-- hopefully will have
Internet soon..

In the meantime, thank you for your thoughts and prayers. You just
watch me, because my life is getting ready to take off.. Actually, it
already is....

Doctors continue to tell me they have never seen a patient with
recurrent burkitt's doing as well as I am...

Getting Better/New Address

2008-08-11T21:15:00.003-04:00

Sorry for the delay. And no video this time, I don't have much time to post this...

Last week I was in the hospital and the second round kicked me pretty hard. My main problem was the headaches--I had one that lasted about 6 days and it was terrible. My other problem was general brain fog from chemo and kind of being confused/not able to communicate well. But these are slowly passing. And again, I can't really complain considering all the things I could be experiencing... My mom came to town last week and will be leaving tomorrow but it's been nice having here here with me.

Then today, was moving day, as I finally have an apartment that I will live in until treatment is up. For those who want my new address, send me an email and I'll be happy to pass it on.

The new place doesn't have high-speed Internet yet, but hopefully will in a few days...

Please continue to pray for me, as I am doing very well overall, but still getting over these last treatments. My next doc appointment is Thursday (just to check blood counts) and then next Thursday, I will have another CT and PET scan to see if I am in remission.

If I can go into the stem cell transplant (probably around September) cancer free, this greatly improves my long term prognosis.

Back from Hospital...

2008-08-08T20:57:00.002-04:00

Back from my second stay at the hospital. I tried to do a video but I need to clean up the hard drive on my computer so I have more space.

From a medical perspective, I am doing great. My blood counts are good and everything is about as good as it can be.

But I will make no lies. I know I will feel better in a few days, but I feel very run down now. It's as if I drank some bleach and it needs to get out of my system. I did finally eat solid food today--and it had been since Tuesday.

The big problem I am having now is with brain fog. I can't think clearly and sometimes it's hard to communicate. I'll write more in the coming days when I feel more coherent.

"Excellent" Prognosis for left hand..

2008-08-06T16:50:00.001-04:00

I'm feeling pretty bad from all this chemo in my system. Good news is
I am done for today and tomorrow is the last day. I should get out
Friday.

I just had 2 neurologists and 4 students come to my room. The doc said
I have an "excellent" prognosis for full recovery of my left hand. He
said the average time is 1 inch for every month. Since the pic line
was placed near my bicep, he's thinking it will realistically take
9-10 months to get full feeling back. They said that they can give me
medicine for it but the side effects are not good so I am probably
better to just ride it out unless I start experiencing pain.

I have no appetite at this point...

2nd day in/cycle 2

2008-08-05T18:34:00.000-04:00

Here I am after having 3 chemo drugs--4 hours of nonstop drip. I had
to shave my head and now my scruff is falling out. I haven't been
clean- shaven in more than 3 years.

I don't feel good, but not bad considering all things.

Hurricanes at the hospital...

2008-08-05T18:28:00.001-04:00

Day 2 in the hospital. The staffing here has been working long hours,
but the hurricane headed towards Houston turned into a tropical storm
and just gave a little rain.

Kind of the story of my life. I seem to have bad things come my way
but somehow find a way to dodge the bullet. My doctor told me
yesterday she has never seen anyone with recurrent burkitt's doing as
good as I am doing and with such limited disease to start with.

I much rather be enjoying my life instead of stuck in this hospital,
but I'm finding ways to be thankful despite it all...

I passed...

2008-08-01T20:07:00.002-04:00

I passed my test to properly change the dressing on my central line and to flush it. It's a bit of an annoyance, but not too bad. I now know the difference between "sterile" and "clean." Big difference. It takes about 20-30 minutes to do.

They will put in a different one when I have the stem cell transplant and I am already looking forward to being central-line free once I am done with all of this. :-)

I'm back in the hospital Monday for 5 days.

Chest Line In

2008-07-31T18:21:00.005-04:00

Sorry for the video sync issue.. I tried to upload it several times. Anyone that knows me, knows I am a perfectionist when it comes to video, but you get the idea...

The chest line was placed today. Take a look at the video if you want a closer look. They said I will probably have to have a new one put in when it comes time for the stem cell transplant.

I always seem to have more problems with the lines/ports/etc. then I do the actual chemotherapy. Today after they placed it, I had to get an x-ray. The line didn't go where it should have went so they made me do this breathing exercises as they pushed fluid into it. Then I had another x-ray. That came out OK.

And when they were trying to place it, they had to use ultrasound because the tech said my veins where "deeper" down then she usually sees. (Perhaps because I have put on a little muscle?) She also commented that I have nice collarbones. I always get the most interesting comments from the nurses that are working on me.

They used procaine instead of lidocaine... and I did have the fainting-like reaction again, but it wasn't as bad this time.

Finally, I had to take 2 classes on how to care for it--since I will have to flush it out daily and change the caps and dressing every week. Oh, and you have to cover it up, it can't get wet. If it gets wet or you sweat, you have to change the dressing right away. I'm back tomorrow to take my "test" to see if I know how to do it right.

Hospital stay POSTPONED

2008-07-28T17:32:00.002-04:00

I went to the doc today fully expecting to be admitted for the second round of RICE chemo. But I reminded her the story of the PIC line and she thought it would be a good idea to have the chest line put in before starting the second round. (The other doc had said he thought it was OK to just use the IV).

So I will still be on track, as this chemo is usually given every 3 weeks. They were going to give it to me after 2 weeks since I responded so well. I had very limited side effects and (with the exception of my platelets being low, but not too bad) my white and red blood counts remain normal.

This is amazing considering just how many drugs they pumped into my system when I was in the hospital and the amount of chemo I had to endure three years ago.

The new line will be put in Wednesday or Thursday. They are going to try a different numbing agent besides lidocaine--as they say my reaction to it is not normal. I'm a little nervous since I had a problem last time, but no need to get overly stressed, right?

As for my left hand, my fingers are still tingling, but I think it's trying to come back. If it doesn't come back soon, my doc is going to send me to a neurologist. It really doesn't bother me too much, but I do hope it comes back.

By the way, I was so excited that I get another week to recoup and gear up for round two that I came home and ran for 20 minutes on the treadmill. I've been trying to keep my physical activity up without overdoing it. If I can stay this healthy going into the transplant, I figure it will make it easier on my body and I will get better a lot faster. It's commonly accepted that it takes about 1 year to feel normal after a transplant, but I am hoping it will go faster for me.

Finally, I had to attend a class to learn how to take care of my chest line once it's installed. I'll talk more about that later. The next blog will probably be Thursday or so...

Round 2 Around the Corner...

2008-07-25T17:30:00.002-04:00

Just got word I will be admitted Monday for Round 2 of RICE treatment. Not looking forward to it, honestly, but this will be chemo 2 of 3... the 3rd one being the high doses given for the transplant. So moving ahead to having my life back...

Back/Bone Pain Better....

2008-07-25T16:20:00.002-04:00

The pain I was having in my bones isn't an issue anymore. It got pretty bad yesterday. Kind of felt like someone stabbing you in your back and would just come or go. Didn't make any difference if I was sitting up or down.

I read somewhere that most of the blood in your body is produced in bone marrow in the area around your lower back/upper hips which I found kind of interesting.

The Neulasta is working...

2008-07-24T12:53:00.002-04:00

It's been an entire week since my last treatment. And I still feel good.

Neulasta is a shot they give you to help boost your white blood cells. It usually takes it a week or two to start working.

It's working. I have some bone pain from time to time. It feels like when your muscles are sore the day or so after a workout--only it's your bone and not your muscle. Common side effect of Neulasta. But at least you know it's dong what it needs to do.

I really have no complaints. I will even go so far as to say the first time around, I never felt this good in the entire four months that I was hit with chemo. I even had a steak yesterday.

Want something for FREE???

2008-07-23T17:10:00.004-04:00

I seem to get the most responses and emails when I talk about non-medical things on this blog... when I have a post that shares a little of my personal philosophy. I'm very encouraged that people are inspired, but that's not really my purpose. I'm just sharing what's on my mind and if you can benefit, so much the better.

So lately, I have been thinking about the idea of happiness and what it means. It amazes me that people will spend so much money to try and make themselves happy. I know I've bought things before I shouldn't have--we all have.

So why--right in the middle of being treated for an aggressive CANCER a SECOND time can I remain so upbeat? I figured I would share my own source of happiness and save you a lot of time and money if you care to listen.

First, I know it's a cliche, but you have to know yourself and be happy to be the person you are. Think about it. There is no one out there just like you. With all your faults, with all your shortcomings, you are person that you are. Even if you are an identical twin, you still are your own unique person. (You know the saying, God doesn't make junk!?)

Keep in mind, a big part of "you" has to do with the things that have happened to you. They have helped shape you into the person you are today. We may have similarities, but no two people on this Earth have lived the exact same life.

Once you have an idea of who you are, you have to take a hard look at yourself and your actions, and realize your time on this Earth is limited. This is not an easy concept to come to grips with. Cancer patients are often times quickly forced to do this against their will. After taking a look at your life, keep what works, and then set some goals to work on things that you need to improve. Always keep in mind what you want to be remembered for once you leave this world. (If you have a unique passion or talent, use it!) With each accomplishment, you will grow stronger and stronger. Your life will have a purpose. You will be happy.

So you look around the world and see people chasing happiness in all sorts of ways. Money. Substance abuse. Expectations. Possessions. No wonder there are so many unhappy people.

The secret is to love yourself, and be glad that God has made you the way he has and given you all the things that he has. If you can reach a true understanding of that, nothing will ever bring you down.

Oh---and one more tip to save you lots of money: Unless you have a specific medical condition, if you want to be in shape EAT RIGHT and EXERCISE. You don't need to buy any books, or join Jenny Craig, or for that matter--you don't even have to join a gym. Just eat sensibly, limit your sugar, stay active, and you should be just fine.

Finally, I have a link to "Traci's Fight to Kick Cancer Again" on the links on the side. Traci mentioned me on her blog and I ask that you pray for her as well. She's fighting cancer for a second time as well. Just watch us. We're both going to beat this mess again. In fact, we already are.

Good report...

2008-07-21T20:05:00.004-04:00

Good report today: A week after treatment, my blood counts still are in the normal range. So I won't go back to the doc until next week. I've even been given the OK to start doing a little workout again.

This is excellent news. I also wanted to share some good news, for those of you who are understandably a little concerned about what I am going through and my long term prognosis. This is from a medical study at MD Anderson and so happened to be from one of the main doctors that oversaw me during my hospital stay:

"those with a prior complete response to initial therapy have a good chance of responding to relapse therapy, especially those in whom the complete response lasted more than a year... overall survival is affected by the quality of response to ICE... "

72 Hours After First Round...

2008-07-20T13:38:00.001-04:00

Hanging in there....

72 hours after 1st round, overall doing OK, main problem is headache and weird-feeling from the after effects of the steroids I was given last week...

Back from first hospital stay...

2008-07-18T16:42:00.002-04:00

I made it. 5 days in the hospital. 10 doses of chemotherapy drugs.

This from someone who has already beat cancer once.

Don't you dare ever call me a wimp. :-)

My meds...

First Round Done!

2008-07-17T20:19:00.002-04:00

Here's a pic of me showing the IV that was placed. The PIC line was removed so they just used a regular IV. I still don't have feeling in some of my left fingers, but hopefully that will come back in time...

But the big news... I HAVE COMPLETED THE FIRST CYCLE OF RICE CHEMO. Only one more cycle to go in 2 or 3 weeks.. and then I have the stem cell transplant probably late August/early September.

I should be discharged from the hospital tomorrow. So it has been a 4-5 day stay. There have been times when I haven't felt too good, but all in all, this was not too bad. I feel pretty crummy and my skin is a little pale, but besides that OK.

I haven't felt alone for the first second. My I-phone has been keeping me busy and it seems like I can't keep up with the emails/texts/phone calls I've been getting. Thanks for reaching out!

I have had several nurses/techs comment that they think my physical activity level (working out, rollerblading, etc.) in the past year or so, is definitely helping me out now. So if you are reading this and you don't workout, what are you waiting for?

I will try to upload a video tomorrow when I am back at the apartment, and re-post the one from when I first got here. All in all, things went very well.

Day 3 in hospital

2008-07-16T13:06:00.001-04:00

The pic line was removed not to long ago. They are using a regular iv
for the time being. My fingers are still numb but hopefully it will go
away in time. When they took it out,it was the worst pain I have
experienced in my hand. I thought my index finger was going to explode.

I feel sick,but chemo side effects aren't that bad. My appetitte has
been good. They give me 3 drugs--one right after the other for 3 days.

I am now about at the midpoint of day 2. Going to be feeling it this
evening!

Video Update: Day 2 in Hospital...

2008-07-15T12:30:00.014-04:00

So yesterday was the first day in. I had my PIC line installed in m y arm (a type of device). I had some problems when they put it in--the same type when my port was put in and taken out a few years ago. My heartbeat becomes irregular, i get sweaty and feel shortness of breath. Not a good feeling.

It seems that I have a "irritated nerve." My thumb and next 2 fingers are numb, but they are keeping a close eye on it and will run more tests if needed. But they don't think this is going to be permanent. I don't have any pain or limited range of motion in my arm.

I took the Rituxian yesterday and just finished my third chemo now. So I still feel fine. I will be on about 3 different chemo drugs for the next few days. They are basically given one right after the other. Right now, I feel great and have a good appetite.

If all goes as planned, I should be out of here by Thursday or Friday.

I'm naturally a little upset about the PIC line/nerve issue. Hoping that it's NOT permanent. But besides that, I give the nurses an "A." Already at one point today, I had 4 people in my room taking care of me. And they are really quick to answer the nurse call button if I need anything.

Treatment starts....

2008-07-15T01:23:00.000-04:00

Will update soon...the bag on the left is rituxian and costs about 6
grand...the others are benadryl,steroids,and fluids

Getting Ready

2008-07-13T15:20:00.002-04:00

I'll be admitted tomorrow morning. I've been preparing things and getting ready for this fight. I hope that I can keep up with the videos, but if not, will keep everyone posted on everything is going.

Guess who has a new 3G I-Phone?

2008-07-11T20:26:00.003-04:00

-I lucked out and got the new 3G I-phone
-Doctors may do an auto stem cell transplant using new drugs as part of a clinical trial... or they still plan to use my sister as a donor
-RICE chemo begins/Robbie admitted on Monday.. this is the pre-chemo to put me in remission before doing the stem cell transplant in about 6 weeks

Barium Overload and a Halloween Costume

2008-07-09T18:56:00.006-04:00

I had several tests today. MD wanted to redo the CT scan and the bone marrow biopsy. I had some other tests as well. Seems like there is a test for everything.

I had to drink so much barium for the CT scan. I've had many of these in the past--and the CT machine is actually what detected the cancer was back. The barium today was more than I have ever had to drink. I even had to take some barium in ways I haven't before, but I will spare you the details on that one. I do not like barium.

I had to wear scrubs instead of a hospital gown for these tests. I had never seen myself in scrubs before. I'm thinking it would make a good Halloween costume sometime.

Then they did the bone marrow biopsy on both sides. A little discomfort. I will probably be sore for the next few days. It's not a fun test to have done, but it really doesn't phase me. It certainly isn't pleasant, but most people are terrified of these... They actually take out a little piece of your bone. The tech showed it to me.

Also found out today I will probably be starting chemo on Monday.

They have a little saying at MD... "there is no such thing as a rare cancer." You see people of all ages, all different types of problems. You would think it would be a depressing place to be, but actually it kind of makes you feel good. Hundreds of people doing their best to handle what life has thrown their way in the best way they know how to....

My sister may help save my life...

2008-07-08T16:19:00.007-04:00

Emory called today. It turns out my sister is stem cell/bone marrow match. They have to do one more test to confirm this, but chances are it will check out OK. We had this test done awhile back, but just now getting the results. There is usually only about a 20% chance you get a match from a sibling.

This is great news and very unexpected!

Since I will be having an allogenetic transplant (coming from someone else), I run the risk of host versus graft disease. Usually a sibling is the best match to your own bone marrow makeup. You can get an outside donor or family member or match, but the closer the person is genetically to you--the least amount of complications you have from the transplant. And siblings are usually the closest... (having a twin is the best)

So it's not going to be easy, but will be much safer than from an outside donor. It's kind of cool to think my sister's stem cells will be transplanted into me, then my body will make blood. And the benefit of using hers is that these new cells have a tendency to attack and kill any remaining cancer cells that the high dose chemo didn't happen to kill. Meaning if I make it through the treatment and complications from the treatment, I will have a good prognosis.

This transplant probably won't happen for another 6-8 weeks or so until I get pre-chemo treatment. It will take about a month, and then I will be closely monitored for 100 days afterwards.

The first year after transplant is the critical time. All types of complications CAN arise. From skin disorders to death. But some people have very limited problems.

Tomorrow is a full day of testing. I could start the chemo as early as Monday next week. I guess I will call it the "clear-up" chemo. The high, sometimes lethal does won't come until down the road....

Welcome to Houston/MD Anderson

2008-07-07T22:21:00.002-04:00

It's been a long day and I am tired.. but will quickly get everyone up to speed.

Today was my first appointment at MD Anderson. I'm finding my way around Houston and really impressed so far. They only deal with cancer and each department only deals with a certain type of cancer. The only downside is that there is a lot of waiting around--so you can't get in a hurry and appts. don't start on time--but that is a small price to pay for good care.

I'm going to have some new tests and they will then repeat some of the tests done in Atlanta. But they will probably go a different route. First do 2 or so cycles of chemo and then the stem cell transplant from a DONOR. So I will have to find a donor match. The benefit of a donor is that it will attack any cancer cells that may be left. The downside is it puts you at risk for Graft versus Host disease. It's a bit difficult to explain (and can be short term or show up months later) but basically certain body parts can be attacked by new cells. Skin problems, liver problem, etc. are possible. But it's the hospital's method b/c more likely to lead to a cure. Especially for younger people like myself. And there are medicines I will take to minimize the side effects. Most problems will probably show up in the first year, so I will be careful during that time frame.

The good news is the new doc says my initial chemo will probably be a lot less intensive than I had the first time around I was on (CODOX-M, IVAC) and is not for the faint at heart. Just when I felt good, they knocked me down again. But I made it through that before. (as you can read in prior blog posts from the first time around).

Well, I will write more when I can. Stay tuned.

Burkitt's It is....

2008-07-02T19:22:00.003-04:00

I am recovering well from the neck surgery. Got the pathology report back today and it shows I do have recurrent Burkitt's lymphoma. The good news is it is limited to my neck area and it's Stage 1.

What does this mean? Whether you have stage 1 or 4, the treatment is usually the same. But the good news is my body will be stronger to be able to handle the treatment. I will see the doctors at MD Anderson next week and see what they have to say. Most likely, they will want to do a few rounds of chemo and then proceed forward with the BMT. (bone marrow transplant). I realize that I won't feel as good as I do now in probably 6 months or so, so doing my best to enjoy every second before going into battle.

To all my co-workers...

2008-07-01T14:27:00.002-04:00

To the best co-workers in the world: Thank you for all the emails. I have so many there is no way I can repsond to all of them and don't want to leave anyone out or seem short....

YOU ARE THE BEST! I'll be watching you throughout this entire ordeal. Keep doing what you do best.

Why NOT me?

2008-06-27T23:46:00.002-04:00

When something bad happens to some people, the first question they ask is "Why me?"

The first time I had cancer, I never once asked myself this question. I don't know why. I just figured it was something I had to deal with it.

Yet again, I find it impossible to ask "why me"? The only question I can ask is "why not me?"

It's a difficult concept to accept, but let's face it: bad things are going to happen to SOMEBODY. Accidental deaths will occur. A family member will be murdered. A child somewhere will have a disease and die. These are things most of us would rather not think about. But they are part of life just as much as anything else.

So now, I find myself with cancer a second time. At first, I will admit, I thought this might be it for life as I know it. But then, about a week later, I thought: I do not have to give into this! If I can make it through this (and I believe I will) and can go on to lead a better life and to inspire others through my journey--then that's an awesome feeling. Furthermore, I posses that drive and energy to make it. That being said, many people do die from cancer and cancer treatment. And while you may be the most positive person on the face of the planet, if it's your time to die, you will. But deep inside, I don't think this is my time to go.

The past few weeks, I have had to make some difficult decisions. It's amazing how cancer makes you do that. You really have to put your health first. Everything else takes a back seat. This has not been an easy time for me.

That being said, I am happier than ever. I am happy that I have life. I am happy about what the future holds. And I will be so happy once this is all over and I will have my life to live again.

So now I want to challenge everyone reading this. Stop and think about just how many things you have to be thankful for. Even if you are having a bad day, I think you will be amazed at how much good is around you. Don't ever ask "why me"? Instead, ask yourself "why NOT me"? and figure out how you can make the best of any situation life throws at you.

Post-Surgery Video

2008-06-27T21:52:00.003-04:00

I shot this video down at my parents in FL just 4 hours after surgery.

As I mention, I have decided to have my treatment at MD Anderson in Houston. My first appointment is July 7th.

I should have the pathology from the surgery back in about 1 week.

Surgery Complete

2008-06-26T20:52:00.002-04:00

Surgery complete. Everything went OK. I recorded a brief video blog but blogger.com having tech problems. I will try and re-upload on Friday and/or write more.

Neck Surgery

2008-06-20T17:59:00.001-04:00

Neck surgery scheduled for next Thursday morning. Should have the results about a week later.

Surgery Soon....

2008-06-19T22:09:00.002-04:00

Since the bone marrow came back negative, the next course of action is to have my suspect lymph node removed to see what wrong.

This far: I know there are malignant cells--I know that it's lymphoma.. but still don't know if it's Burkitt's yet or not. And of course, I may have to have a BMT (bone marrow transplant) regardless, but if it's a very slow growing lymphoma--perhaps not. I'm not an expert, but apparently agressive lymphomas (such as Burkitt's) can come back as something not as aggressive and vice versa. But when you are dealing with a reccurent cancer of ANY kind--of course you have to take the right action.

July 3 was the soonest appt. I could get at Emory to see an ENT doctor. So I came down to my family's place in Florida. I will see a surgeon tomorrow, and most likely, have neck surgery early next week. The results could take a few days to a week. But hopefully after that, I will know if this is Burkitt's again or not.

Bone Marrow CLEAR

2008-06-18T16:56:00.004-04:00

NO CANCER CELLS FOUND IN BONE MARROW...

This is really good news for me. What this also means is that I will have the suspect lymph node surgically removed to find out for sure what's wrong...

Is it Burkitt's again or a different lymphoma?

2008-06-16T14:40:00.004-04:00

Just back from the doctor's office. I was suppose to go to the hospital on Wednesday. Now, we aren't sure if this is Burkitt's again or another lymphoma. So we will wait for more test results, and possibly have to have neck surgery to take it out and find out for sure.

GOOD NEWS: PET scan showed neck was only area with a tumor, and spinal fluid came back clean. So now, it's a matter of waiting for the bone marrow test that was done last week...

Four-Wheeling

2008-06-14T20:01:00.002-04:00

Last weekend, I went down to visit my family outside of Quincy, Florida. I took some timeout to go 4-wheeling in the woods.

Tests and the Waiting Game...

2008-06-14T16:10:00.002-04:00

Wed., Thurs., Fri. were nothing but tests. I'm going to be re-staged to find out how extensive the cancer is. This includes a bone marrow biopsy, PET scan, and spinal tap to determine if it's in the spinal fluid. I should have the results Monday and will update the blog then.

I guess I misunderstood the BMT process. I will be given some smaller doses of chemo to clear me out and only until I'm considered in remission will the BMT (or transplants) will take place.

Friday was information overload. I had so many tests including heart and breathing tests. Seven appts. total. The highlight of the day was Brenda that did my breathing test. She had such a great personality. I try to laugh as much as possible when I am having these tests done. Brenda--if you so happen to be reading this.. I hope you enjoyed your Panda Express.... :-)

So I should have my chest port placed on Wed and will be admitted there after and treatment will start right away.

I am a bit concerned that my lymph node on my neck isn't larger. The first time around it was VERY noticeable. But hopefully this is something the doctor can address on Monday.

For now, I am trying my best to enjoy life before having to start this second fight...

First Video Blog....

2008-06-10T18:14:00.002-04:00

It's Back...

2008-06-06T15:54:00.003-04:00

Well... I hate to bring bad news, but looks like Burkitt's is back. This is the same cancer that has a 90% cure rate. This is the same cancer that usually comes back within the first year, if it comes back.

I will begin treatment as early as next week. This will not be an easy fight. It will be a lot harder than the first time around and will require a BMT (bone marrow transplant).

An enlarged lymph node showed up on my last CT scan--and a needle biopsy showed lymphoma had returned.

I will update this blog as I know more.

Just because they may sound kind of the same, doesn't mean they are the same

2006-08-11T09:17:00.001-04:00

So I found out yesterday, the pathologist said the early test showed signs of abnormal lymphocytosis not lymphoma. There is a big difference between the two. One is cancer, and one is not. The surgeon who did my neck surgery thought they were one and the same and told me my cancer was back. Keep in mind, he called me with the information on my car ride home from surgery. To detect the presence of lymphoma would have taken at least 48 hours. Now I know.

So what caused the lump?? All tests conducted for any underlying infection have proven negative, but the final pathology shows I had lymphocytosis.

According to the Mayo Clinic website:

"Lymphocytosis is an abnormal increase in the number of lymphocytes, a type of white blood cell. White blood cells help fight infection.
Lymphocytosis isn't a disease but a sign of an underlying problem. It causes no symptoms and may be found incidentally on routine blood tests done for some other reason. The most common cause is a viral infection".

So the bottom line is that this could have happened to anyone. Anyone could have the flu, a stomach virus, or eat food that was contaminated or improperly cooked and get a lump on their neck as a result of your body fighting off infection. Kind of odd to think about it, but since I show no signs of sickness and have no symptoms, there is really nothing to worry about.

I am glad at the outcome, but after 3 weeks away from work, I need a vacation from these doctors.

OH WHAT A DAY....

2006-08-09T15:55:00.002-04:00

This was written on Tues. Aug 8. My internet connection was down so posting it a day later..

Oh what a day

I am shocked. OK. I am beyond shocked. I don't know if anything will ever top this.

Today I went to the doctor's office to see my oncologyogist. The staff seemed upbeat which seemed a bit odd to me given the circumstances I was facing.

The doctor came in and said that he had a look at the full pathology and it showed NO SIGNS OF CANCER. That's right NO CANCER.

The news I got Friday was based on a prelimary pathology review by a pathologist at Emory Eastside. I knew that, but keep in mind, for the needle biopsy I was told we could get a positive (which meant it was positive) or a false negative.. or a true negative.

So a few hours after surgery, if a surgeon were to tell you the pathologist took a look at the sample and it appears to be lymphoma, and he goes on to tell you to consult with an oncologist what would you do? You are not really assuming anything in being told that you have cancer you are being told it appears you have cancer so you prepare for it.

You think about everything you have been through, you wonder if you will live or die or if you can make it you start preparing everything. You are really down but try to stay positive. You do a desperate search for a good doctor.

I have experienced many things in my lifetime, but nothing ever this dramatic. I have cancer, go through the treatment, wait 10 months later, a lump pops up on my neck, I have surgery and told it looks like lymphoma then told, nope, you are OK after all, no cancer.

Keep in mind, last year, when I first found out about my Burkitt's, the pathologist who reviewed the slides said everything looked OK. That time when the full report came back it tested positive for lymphoma. This time the reverse happened.

I still want to have everything reviewed again. But I can't believe it. I could write more but don't know what else to say. I AM CANCER FREE.

My heart goes out to all the people out there who have beat recurrent cancer. They make the rest of us who have only had cancer once look like a bunch of wimps.

Pick a doc, any doc

2006-08-07T19:54:00.000-04:00

So today, I was on the phone making all the calls I could.

I started by calling the Cancer Resource department for my insurance company (United Health Care) which is surprisingly a great resource. The lady on the other end of the line remembered me from last time around and gave me the names of hospitals that have clinical trials in Burkitt's-or at least some specialty in lymphoma. It's kind of weird, because you just randomly call a hospital office, tell them your sob story and they get back with you. I don't know what happens in between. I'm still waiting to hear back.

I also got a call back from Dr. Otis Brawley from Emory. He was out of the office but called me personally and has setup an appointment for me to see a doctor on Friday at Emory that has specialized experience in lymphoma. Since this is the 2nd time around for me, I really have to make sure that I get the proper treatment. Despite some bad experiences with doctors in the past, I know that there are some excellent ones out there that do care about patients--and I remain hopefully that I will find an excellent, intelligent doctor.

So I see the surgeon again on Wednesday.. I see my old oncolgist tomorrow afternoon, and I will see the new one on Friday. The ball is now rolling towards me getting better and beating this thing called cancer for the second time.

Ready for the Doc Search...

2006-08-06T21:13:00.000-04:00

Well, I have complied a list of doctors which I will start calling tommorrow. I don't really know too much what to expect or what anyone is going to say.

I have been trying to enjoy the next week or two--knowing that it will be the best days I see for quite some time. I'm trying to eat anything that I want to--becuase I know my taste will be going away before too long. Once I start treatment again, almost everything will be going away...

It's kind of a strange place to be. But I feel better prepared this time around then I do the first time. I know some of the effects I will experience, and I know it's likely to be worse this time around but I will still make it through. I'm not going to give in easily or feel like a victim.

The next week or two is very critical. The decisions I make and the decisions of the doctor's care could determine the outlook for me for my lifetime.

HERE WE GO AGAIN

2006-08-04T19:12:00.001-04:00

YES. LOOKS LIKE I AM IN FOR ROUND TWO.

I went in for the neck surgery today and everything went well. I had the option of waiting for the doctor, but decided to go home. I got a phone call from the surgeon who said they did some early tests and it came back as lymphoma. I don't know if it's Burkitt's--but I know my CT scan in May came back clean so the tumor developed in two months. I'm not a doctor (although I am obviously smarter than some) but I would say it's most likely Burkitt's again.

So soon, I will have to go through staging and see just how bad it is.

I'm not happy with the news, but taking it well. Nothing I can do but keep a good attitude.

I got the name of a oncologist at Emory/Winship from Sanjay Gupta at CNN but if that doesn't work out, I may have to travel to go to another hospital like MD Anderson in Houston. Not really sure at this point.

I don't know what treatment they will want to do--I think it's unusual for someone with Burkitt's to have it reoccur--but it usually does in the first year. Best case, I will repeat what I did in 2005--worse case I will have to get a stem cell transplant and go on something more high dose than before.

The thing I really have in my favor is that the cancer responds well to the chemotherapy. In my case, I simply had some microscopic cancer cells that hung around and reproduced themselves. Here we go again....

Moving forward...

2006-08-03T13:53:00.000-04:00

Yesterday I made another appointment with another ENT doc. The orginal doctor was not returning calls and it was really somewhat crazy.

So Friday (tommorrow), I will have surgery to remove the small lump. Yesterday, I went and had another CT scan and then went to the hospital for pre-op.

I'm glad to finally be moving forward to find out what this is--but it's kind of sad it took a month to make this happen. The nurse at the hospital and the lady that operated the CT machine (who's young daughter is about to finish 2 years of lukemia treatment), both were AMAZED that the doctors blew off my request for a biopsy sooner given my medical history.

Of course, this bump may be nothing, and I hope that it is--but glad that I will know for sure.

That being said, it's not a good feeling to have all these scars all over the place and to feel sick all the time and different than everyone else my age who is healthy and enjoying life.

Yesterday, I ran into one of the ladies that works at the hospial admissions (one of the nice ones) that I met last summer. She told me that a few weeks earlier, a young guy came in with testicular cancer. She told him my story and how I always kept the right attitude and she saw me go through the entire process. She said his eyes lit up when she told the story and he walked away feeling inspired. To think that something like that would have ever happened, from someone I never reallyknew I would ever impact--well, that is a very special feeling. It doesn't make this all worthwhile, but it makes it a little more tolerable.

Amazingly, I am now calm and relaxed about the entire procedure I will have, and the outcome--whatever it may be. If it is nothing, I will walk away enjoying life and respecting life like never before... if it's cancer again, then I will just have to go to war for round 2.

more waiting...

2006-07-31T11:41:00.000-04:00

So Thurs. I called the docs office for the 3rd time. I got a call back 3 hours later and the nurse told me the sample had not been preserved properly so no results.

I still wait to see what is going to happen. The docs office is suppose to call me today. We may jump straight to the surgery to have complete biopsy done instead of just a needle biopsy. That's the only way to know 100% what is going on.

Still Waiting...

2006-07-25T11:31:00.000-04:00

I still don't have the results from my needle biopsy. I called the doctors office yesterday and left a message on the nurse's voicemail... will update as soon as I hear something.

ENT Visit

2006-07-18T06:46:00.000-04:00

So yesterday, I had my ENT appointment.

The good news is that they were able to do the needle biopsy then and there. I should have the results in about a week.

The doctor made no comment as to what he thought the enlarged lymph node was caused by. He did think it was very important to find out what this was--esp. considering my past medical history. (This doc was in the same office as the ENT doc I saw a year ago, but was a different doc).

So here's the deal: The doc says the needle biopsy can give a false negative, but not a false positive. So a couple of things could happen. A) There may not be enough sample and I may have to have it done again, b) the test could come back as cancer, which would mean I have cancer again, or C) the test comes back negative, which means it could or could not be cancer.

The bottom line is the new ENT doc thinks that I should have the lymph node surgically removed just to play it on the safe side. If it is removed, it can be fully tested and I will know what it is. (Although if it is benign, I may never know what caused it).

The physicians assistant that helped with the procedure said that she agreed with my oncology--the lump did not look like a typical cancer tumor. It moved around and was soft instead of being hard.

The waiting game begins.... but it looks like I will be having neck surgery in a few weeks... hopefully chemotheraphy will not follow.

Appt. Scheduled

2006-07-12T10:43:00.000-04:00

So I called the oncologists office and found out even if I keep my appointment next week, I will still have to see the ENT doctor to schedule the biopsy.

So I scheduled an appt. with the ENT on Monday afternoon. I will request that they schedule a biopsy as soon as possible and hope to know what's up soon...

Oh, no.. Not again...

2006-07-11T07:25:00.000-04:00

So last week, (July 4th) I noticed a small bump on my neck. I was very scared. I called the doctors office the next day and they fit me in.

My oncologist did not seem very concerned about it. He said it was just a swollen lymph node and wasn't consistent with a Burkitt's tumor. The thing that worries me is that the bump is in the same general area as the initial bump and came about the same way. Also, when I noticed the first lump a year ago, the doctor's didn't seem alarmed by it.

My doc suggested I come back in 2 weeks because he didn't want to "worry about having it biopsied." I took that and called it a day.

The next day, I called the doctor's office again. The fact is there is a bump on my neck and I haven't been sick with a cold or had any infections so there is no good reason for it to be there. I thought it would be a good idea to have a needle biopsy just so we know what the bump is. In two weeks time, if it were still there, we would have to have it anyway. He said I would have to see the ENT (ear, nose, throat doctor) in order to have the needle biopsy done. (which by the way, would be the same doc who I first saw with the first lump who told me it was a 95% chance not cancer).

Am I crazy here or do doctors not make any sense? In years of practice, does logic go out the window? If we have the medical technology to know what something is why not find out? And why send a patient to multiple doctors when one will suffice?

I was anxious, sacred, and worried, but now I have a better mental attitude. Worse case scenario is that the cancer is back and I have to undergo chemo again, maybe get a bone marrow transplant this time around. I've been through the chemo process once so I could do it again.

Best case scenario is the bump is nothing and will go away. I also have the fact that my oncologist doesn't think it looks cancerous--which is a good thing.

I will update the blog as a I know more. I feel this is an important part of the healing process--but I hope others out there, once they are in remission, never have more bumps popping up on their necks.

1 YEAR, ALL CLEAR

2006-05-12T09:10:00.000-04:00

Sorry, I have not updated this sooner.

Yesterday I was at the doc office and had my one year checkup. May 2 was my Burkitt's diagnosis date so that is considered my annivesrary date.

I had a full CT scan last week and everything came back great. The only problem is that I have some type of issue with my thymus gland which is suppose to be as a result from the chemo and will eventually fix itself on its on.

The only side effect I have from this ordeal is a low white blood cell count. It's below what is considered normal, but not enough for me to notice anything or really effect me in any signifigant way.

I have been going to the doc every 2 months.. now it will be every 3 months. Can't believe where I was this time a year ago, and never thought things would be this good a year later....