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.