Tumor #7gk

 

   Gamma Knife

 

 

    The new millennium brought new hope for me. I was diagnosed with my seventh brain tumor around the end of November of 1999. Surgery was no longer an option. My head and brain could go through another conventional surgery But this time, there was a new option for me. It was called the gamma knife surgery. The gamma knife surgery was not new. It was actually discovered in the late 50s in Sweden. But it was new and better than ever at Wake Forest were I have been treated in the past. I thought that if I could just hang in there, eventually there would be a new treatment for brain tumors and even maybe a cure. I was eager to put the gamma knife to the test! But I wanted to wait just a little bit longer with the holidays coming up. So I rolled the dice and told the doctors I wanted to wait after the holidays. They scheduled it for January 4, 2000. I was to be the first gamma knife surgery patient of the new millennium!

 

     So I was excited about the chance of removing this tumor without actually being cut on. You see, the Gamma Knife is not really a knife, but uses radiation with pinpoint accuracy to destroy tumors. I went through the procedure in the first week of the new century, Jan. 4, 2000. I was somewhat excited because I knew that given enough time, eventually, there would be a procedure that would eliminate the need for open surgery. That time had finally arrived. Dr. Edward Shaw at Wake Forest University at Baptist Hospital medical center did all the work. Everything went well, and I was able to go home the same day that I had the Gamma Knife procedure. I didn't feel any different, but I thought that all of my troubles were finally over. Well...

 

     Three days later, I had a major seizure requiring hospitalization. The doctors felt that it was caused from swelling in the brain. I was put on steroids to alleviate the swelling. I was still having problems with seizures (3 or 4 a day) and I was in a lot of pain. The tumor was dead inside my head, but the dying tissue could not be absorbed by my body fast enough causing pain, pressure on the brain, and seizures. The doctors tried several spinal taps to remove the pressure in my brain. A spinal drain was put in. The my screams could be heard down the hall! I couldn't help it. That hurt more than the spinal taps, and they were no picnic either! Anyway, it caused more seizures.

 

     Then a lower lumbar shunt was implanted. A lumbar shunt is placed in the lower back, and is threaded into the abdominal cavity. The lumbar shunt is safer if the surgeon feels that infection is a risk, and I was at risk for infection. I felt fair, and I went home.

 

     Two weeks later, I started to feel bad again. By this time, I was very weak and very sick. And now, I was beginning to throw up and the seizures were more frequent. My wife, Diane, called Dr. Shaw, and he said to come the hospital, now! We drove (Diane did) to Winston-Salem from Asheville, a two and a half hour drive. I was in the back seat eating Vicodin and puking in a bucket! 

 

     A new MRI showed that I had now chemical meningitis. Dr. Branch didn't want to operate. He felt that he had "pushed the envelope" and was concerned about infection. Every time you get cut on, your lose your ability to fight infection in that area. Infection in the brain is worse than the tumor itself is. However, he had no choice but to operate to remove all the "junk" in my brain that had accumulated in my brain cavity. (Wake Forest Medical Center in Winston-Salem)

 

 

 Tumor #8 os  2000

 

 Time to Die...again!

 

      Number seven (2000) just about killed me. Actually, the gamma knife surgery worked. But I waited just a little bit too long and the tumor had gotten bigger which compounded the side effects. Seizures, headache and swelling in the brain. Imagine it like cooking oatmeal. The more cooks, the bigger it gets. Same principle in my case. As the brain tumor tissues were being cooked by the gamma knife cobalt radiation, the brain started swelling so much that it caused all of these bad effects. I was dying....Again.

 

     Like I mentioned before, everything was tried between January through April To avoid surgery. I started having periodic spinal taps to lower the pressure. Even a spinal drain. But the brain kept swelling. My neurosurgeon, Dr. Branch decided that the only way to have any chance at all was to open me up again. Open surgery to clean out the tumor cavity and try to eliminate the cause. He was able to do that without causing any damage to the tissue. Then, it was just a matter of time to see if I would survive. After two weeks, I seem to be over the hump and had dodged another bullet.

Dr. Branch did number 4, 5, 6 and reluctantly #8.  So happy that he did!

 

 

  Heavenly Intervention ?

   

      I made it through the surgery! When I was in the recovery room, I remember waking and talking to the nurse like nothing had happened. But when I was in ICU, the pain became unbearable. I screamed at the nurse to give me something for the pain. He said that I was maxed out on morphine, and could not have anymore. I have never, ever been in so much pain my life. I prayed to God, "Lord, You said that You would not give me more than I could handle. Well, I can't handle this pain. Please, make the pain tolerable, or let me die". In less than three minutes, the pain subsided and I was resting comfortably. Praise the Lord! 

 

 Two and a half weeks later I went home. I was weak and still nauseated. But it wasn't over...yet. The shunt was working well and I felt very alert with no pain in my head. For the first time in 30 plus years, I didn't have major headaches everyday, my head was clear, and the seizures had ceased! But the lumar shunt, located on my right side, was killing me! Every step, every move, every breath hurt like I was being stabbed in the side with a dagger. The only way I could eliminate the pain in my side was to curl up in a fetal position and stay there. I kept thinking that if I didn't move, it would heal up and I would be O.K. But the pain got worse. After the surgery, there really was no need for the shunt, so Dr. Branch removed it, hoping that it wouldn't cause more pressure. It didn't and everything was working just fine!

 

  The Clot

 

      One morning I got up to use the bathroom. As I got up, my legs would not hold me. I thought that maybe I over did it the day before (I was starting to walk to the living room from the bedroom) so I laid back down and used the urinal that I kept from the hospital. The next day it was the same or worse. I hobbled with my cane and sat in my easy chair, watching the birds. I had on the usual clothes, T-shirt and jogging shorts. That's when I noticed my right leg was swollen. Not just a little, but double in size. I was scared! I had remembered that the doctor said that if I had a loss of breath, or got swelling in the legs, go to the emergency room. My wife was at work and I could not drive myself, so I called 911.

 

 The ambulance came and took me to the E.R. where they did an ultra-sound. They found a D.V.T. (deep venous thrombosis), or blood clot. The swelling was so bad that skin on my right foot broke and was bleeding. My upper thigh was so swollen, it pushed on parts of my body that should not been pushed on! (ouch)!

 

 It felt like I was kicked, but the pain was constant. I was on IVs to devolve the clot, and then I was put on blood thinners (Coumadin). After more testing, Dr. Pekal (Cancer Care of WNC) found that I had a rare blood disorder called "factor 5 Leiden mutation". It is a blood disorder in which the blood clots at a rate 60% faster than the normal person. Thus, I am much, much more prone to thrombosis. After eleven days, I was released, although the swelling had not subsided much. It took six months before the leg was back to normal, or close to it, and will be on blood thinners for the rest of my life. So now instead of worrying about a brain tumor or a blood clot, I have to worry about bleeding to death if I have a cut!

 

 I was still having a lot of pain on my side from the shunt. I was in a no-win situation. If I moved or walked, my side hurt. If I didn't move around, there was a chance I could get another blood clot...but my head felt great! I went back to Dr. Branch to talk about the shunt. He said that sometimes a shunt needs to be revised, or repositioned. We decided to just take it out. It did its job, and there was no need to have it if it was causing problems. So after the surgery for the shunt removal, I started to feel better immediately, although with the shunt gone, the headaches returned. I can put up with a headache, but I could not put up with the pain the shunt was causing! So after a slow, painful recovery, I felt well enough to "carry on" and function fairly well in society.

 

 Even though people with brain tumors function fairly normal, there are thousands who have major deficits. The thought of a recurrence has become a reality for me. I was diagnosed with a brain tumor for the eighth time. (2002) Again, the Gamma Knife surgery was in order. This time, everything has worked out so far.

 

 It may not sound like it, but I have had a great life! I have a terrific Mom and Dad. I have best sister in the world, Nancy, and a very supportive wife, Diane. I also have been privileged to have a wonderful step-daughter, Laura, and a son-in-law, Eric, whom have blessed us with a granddaughter, Elizabeth. She is sooo special! And now, another granddaughter, Anna is on the way! I love them all.

 

 This is not a fare-well send off, by any means! I have a few goal to achieve yet. Some of them are to see Elizabeth in her prom dress, to be brain tumor free, and to die of old age!

 

 

   Tumor # 9  Update 12/03

 

       Oh Oh. I spoke to soon. Your not going to believe this...I need to write another chapter. Yes, its back. On November 11, 03, another tumor was spotted on during my six month MRI. Again, its GK time (gamma knife). On December 2, 03 I had another MRI in conjunction with the GK. More tumors. All of those areas were nuked with the GK. I will under go chemo in the middle of January.

 

 You know, as we read this article, I wonder, are there stray tumor cells in my brain still multiplying?... or at rest?...or dying? Those are questions that are asked by all brain tumor survivors. Our brain tumors always are on our minds. We can never rid the thought that we have a brain tumor (or had), and we get a real tense feeling when we get close to our MRI appointments. Nevertheless, I am thankful for the great technology and I still believe we are getting closer to a breakthrough! Hang tough...

 

 

   Update 8/1/2004

 

     I  gave up...

 

      In the last update, I had reported that I had a recurrence and had Gamma Knife surgery. What I did not write at that time, was that when I was dx in Noveber of 03, I told my doctor something that I never thought I would ever say. I told Dr. Shaw, "OK. It wins. The tumor wins. I am tired of fighting. Keep me comfortable and let me die." I couldn't belive what I was saying. But that is how I felt. Thankfully, my brain tumor group friends picked me up and got me ready to fight…again!

 

   Tumor #10  8/20

 

     After talking to my friend, Tammy Hartley, I was ready to go back in for gamma knife surgery. Tammy had straightened me out when I told her I wasn't going to do anything with the tumor and that I was ready to give up and whatever happens, happens. She got in my face and said, "you will not give up. You can't give up. You have taught us not to give up no matter what, so that means for you too. "

She was right and I'm glad she got me straightened out and I went back to Wake Forest and had gamma knife surgery... Again!

 

   Chemo

 

       It has been six months since my update. Great things are happening! The tumor that appeared last November is slowly dissipating. The most recent MRI last week (7/04) shows that the Gamma Knife surgery in last December has killed the tumor. The outline of the tumor is still visible, but has taken a different look in color. A dark shade of gray much different than the contrast that eerily glowed as we viewed it six months ago. And just in case that there are some unseen abnormal cells that may cause a recurrence, Dr. Lesser and Dr. Shaw at Wake Forest Comprehensive Cancer Center in Winston-Salem has started chemo. Temodar 440mg a day for five days, blood work two weeks after, and start all over in two more weeks. It is a real roller coaster ride! But if it works, I am all for it.

 

   2004 Temodar

 

       People ask me what can they expect on Temodar. I can't answer that. But I can say how it has affected me. The first night I took it, I was nervous. I didn't know to expect. The next morning, I thought I would be sick. I wasn't. Nor did I the second day. A little queasy the third and fourth days, and a lot queasy on th fifth and sixth days! The anti-emetic, Zofran really helps. The Zofran had an unpleasant side effect for me though. Constipation! Stool softener helped. I also have noticed that pills don't go down as easily as they use to. It is like my throat says, "What are you trying to put down into my stomach? This stuff is toxic!" So I talk to my throat and stomach and tell them, "Open up! Got some good vitamins for you. Mmm…this is sooo I pray that all of you brain tumor survivors and caregivers to muster all of the strength and courage needed to fight the fight and win the battle.

 

                                                     "The only time you lose, is when you quit trying." (Ditka)

 

 

   Update 4/26/2005

 

 

 

 Time for a new update! It has been six months since my last update. Obvious, I'm still kicking, but not quite as high! I have good news and bad news. The good news is that the tumor that was found about 14 months… ago is dead! There is no doubt that the gamma knife surgery has again saved my life. The Leksell gamma knife has stopped three tumors dead in its tracks, allowing me to enjoy life which I so cherish. I am also very thankful for the Temodar which seems to stop any renegade cells that may have been lurking outside of the perimeter of the gamma knife target area. I still have two more chemo cycles. Part of me says "I sure will be glad this chemo is over," but in other part of me says, "I am afraid that stopping the chemo will invite a recurrence." That's is when I remind myself that I have turned these brain tumors to the Lord a long time ago, and that I need to continue trusting Him.