Chest Line In

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

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...

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....

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...

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???

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...

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...

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.