My Journey with SCLC

[Remembering Dave]

Hello, my name is David and I am a Lung Cancer Survivor.

I was diagnosed with Limited Stage Small Cell Lung Cancer at the end of March, 2003. I was 38 years old, married with a 1 ½ year old daughter. My wife and I went to China to adopt our beautiful daughter, Faith, in Oct of 2002 and returned home with her on Nov. 2nd, 2002. I started having recurring bronchitis and trouble with asthma as soon as we got back. A lot of people we traveled with came down with some kind of bug with similar symptoms so I just figured it was some bug picked up in China. (precursur of SARS?) Well, mine kept coming back and coming back, and coming back. I went to one of those doc-in-the-box places on three separate occasions over a four month period where they took chest x-rays and drew blood for some basic tests. They sent me home each time with a diagnosis of bronchitis or a respiratory infection. They told me that the x-rays showed Rochi (sp?) which is typical with bronchitis. In March 2003 I started getting really, really tired and also started having chronic leg cramps at night. The leg cramps got to the point where they just were not your regular leg cramp. Instead of tightening up, the muscles started rippling, like deep sea waves or like electrodes were attached to them and they were jumping. I was so tired and the cramps were so bad, and of course still having problems breathing that my wife took me to the emergency room. The Doctor who saw me took blood and did an extensive work up and also took x-rays. He came back and said you either have a severe lung infection or you have Lung Cancer. They took me back for a CT Scan which verified the cancer diagnosis. Turns out that my sodium level was extremely low, so low in fact that the doctor said that in another day or two I probably would have gone into a coma. The low sodium was being caused by the tumor. That was on a Saturday night. It took them until Tuesday to get my sodium level up to the point where they could do a biopsy, which confirmed SCLC and then I had a port-a-cath installed and started chemo on Thursday. I went home Friday. Over the next several months I had 6 rounds of chemo. (3 days in a row, every 3 weeks. VP-16 and Carboplatin), 35 rounds of Radiation to the tumor site and then 15 rounds of PCI (Prophylactic Cranial Irradiation). With the chemo the only side effects I had was fatigue which got progressively worse as the chemo treatments went on. The radiation to the tumor site was a breeze as well, no skin burning or problems swallowing. The skin under my arm did start to get a little burn during the last week of radiation but not that bad. I had some pure aloe cream I received from my radiologist which I put on every day from the beginning of treatments. I had a CT scan performed after my chemo and radiation was completed which showed the tumors were gone. Actually, my Onc. said that there was still something there which they thought was scar tissue from the tumor. I decided to go ahead with the PCI, which is a pretty controversial treatment but my wife and I figured that anything to increase my odds of survival was worth the risks. I will admit that he PCI did have some unpleasant side effects but again well worth it in my opinion. My main problem with the PCI was that I had some brain swelling, to be expected I was told, I was given some steroids for it. I do not get along well with steroids. I react very badly in fact becoming a holy terror, I will admit it. But……...that was only for the 3 weeks I had the PCI treatments. After that I came off the steroids and the fatigue I had was incredible. I also had a little short term memory problems but heck I had some short term memory problems before my diagnosis and as tired as I was I can’t really say it was caused by the PCI. I only had to have one blood transfusion when my blood counts got dangerously low. I highly recommend getting a port-a-cath installed, it saves your arms and makes the chemo treatments so much easier. I did have the catheter float up into my jugular vein in my neck one time and they had to go into the vein in my crotch and run a wire up to my neck, lasso the port and pull it back into place. I got to watch the procedure on TV monitors as it was being done. They would have put me under if I wanted. It has been a long road to get my energy back but it is coming back bit by bit. I am still not up to 100% but am able to do most of the things I did prior to diagnosis, it just may take a day or two to recover. I have had scans performed every three months alternating between CT Scans and PET Scans and each time they show No Evidence of Disease (NED) They still show some scar tissue but even that seems to be getting smaller on each scan. My Onc. said I could start getting scans done every 6 months at this point but I have requested them to be done every 3 months, still not comfortable stretching them out longer. I went back to work in Dec. on a part time basis and then started to try and work full time in Jan. 2004. I am a Mortgage Underwriter which is a pretty detailed oriented and stressful job and have not noticed any decline in my mental abilities other than normal things associated to being tired at times. On June 4, 2004 I had my port-a-cath removed!!!!! To get it removed they just shot me full of novocaine and “yanked” it out. The procedure took about 20 minutes and I was wide awake throughout it and did not feel a thing and drove myself home afterwards. Ignore the statistics. The worst thing I did, which I am sure every one of us has done is look up the survival statistics. I am not a statistic!!! Go to

http://cancerguide.org/median_not_msg.html

. One other thing which I did for my mental well being was Imagry. Imagry is something I believe helped to heal me as much as the Chemo. and Radiation. I am a firm believer of mind over matter. Your mind is a powerful tool. You really can do almost anything if you put your mind to it. There are many different approaches to imagery you can find and try. I have heard of people going into a deeply relaxed state and envisioning that they are deep sea divers and they go down to the bottom of the ocean which was covered with crabs. The crabs represented cancer cells and they would shoot the crabs with their spears. Every time they went down there were less, and less crabs until finally there were no more crabs and they were cancer free in reality. If you have been newly diagnosed I would highly recommend you look into Imagery. I listened to Shostakovichs 5th Symphony performed by the New York Philharmonic Conducted by Leonard Bernstein every day. This symphony is approx. 1 hour long. I had some really good headphones and I would lay down and listen to the symphony and picture a huge army marching through my body, gong into each part of my body, hunting down the cancer cells engaging them in battle and killing every single cancer cell, taking no prisoners. I would do this while receiving my chemo as well which really made the chemo go much more quickly. Please explore this technique. If nothing else it kept me focused and kept my mind in a positive state. In addition to the chemo and radiation, I prayed each and every night. I prayed for God to give me the strength to face whatever may be in store for me. I also prayed that He heal me but I know that God’s plan does not always match our plans. My faith and belief in God was one of the strongest aspects of my mental well being and my ability to stay focused and keep a positive outlook on life and the challenge I was facing. I never let it enter my mind that the cancer was going to beat me. I was a professional Trumpet player for many years prior to becoming an Underwriter. I had for years played full time in bands traveling up and down the East Coast, playing in shows and with Ringling Bros. Circus when they came to town for several years. I received my Music Degree from VA Commonwealth University where I played Lead Trumpet in the Jazz Orchestra as well as the principle seats in the Wind Ensemble and Orchestra. Music was such an important aspect of my life that I was really trying to keep it a part of my life having made the decision to go into another line of work for personal and financial reasons. In March of 2003 I was preparing to play the Easter Cantata at our Church when I was diagnosed. One of the lowest points after being diagnosed was when I realized that with Lung Cancer I would not be able to play the Easter Cantata and possibly never be able to play my horn ever again. I broke down. I was so very lucky that I had a nurse who, to tell you the truth, was really getting on my nerves, well, she came in and prayed with me and at that point I new I was going to be OK. I have been lucky to have really good medical professionals with me. Facing cancer, LUNG CANCER, is a daunting task, one which affects everyone differently however it is possible to beat it. I have a new lease on life, going through this has given me a new outlook on life. You re-align everything that you think is really important in life. This has been a long difficult road but with the support of everybody here at this wonderful website, my family, friends and my trust in God I have been able to face every step with knowledge and strength. My journey may not be over but I know that no matter what comes down the road I can handle it.

Please feel free to contact me or my wife with any questions

In Gods Name,

David C.

postscript added by Dave's wife, Karen, August 2006:

About a week after having his portacath removed in 2004 Dave was playing with our daughter and they "head bonked" - she hit his forehead and the pain for him was unbearable, not the usual little ouch you'd get. That was the return of the SCLC. It came back in his right frontal sinus cavity. He had six months of chemo and radiation to that spot. At the end of that six month treatment that tumor was gone, but scans showed that it had spread to spots in his spine, hipbone and liver - WHILE GETTING THE CHEMO. He started on more chemo in February 2005 but he could not tolerate it like before - his body was just worn down and out by all the chemo - and the SCLC took over. He ended up in the palliative care section of our big university hospital in mid-June 2005 in excrutiating pain in his back that the doctors could not alleviate. He could not lay flat to get an MRI of his back, but the docs thought that the tumor growth on his spine was cracking his back. He ended up in a pain filled coma for almost two days and died holding my hand, with his parents and sisters standing by. He fought long and hard and with every ounce of soul and strength he had, I know he wanted more than anything to live to raise our daughter whom he loved more than anything possible.

SCLC is nasty, relentless and aggressive. If it could take Dave it could take anyone. Until the cancer spread to his spine I never imagined it would beat him - he was such a fighter and stubborn.

Dave was a devout and strong Christian and when he passed I could literally feel his soul lift. I know he now resides with Jesus. Faith and I are doing OK and trying to be strong, to make him proud.

He was a good man.