72 Hours After First Round...

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...

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!

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

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...

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....

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

Getting Ready

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?

-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

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...

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

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....

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...

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?

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

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

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

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

Surgery Soon....

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

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?

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

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...

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....

It's Back...

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

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....

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

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...

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

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...

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...

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...

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

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.