Remembering Dave

Hey David, David here. Sounds like pretty good news. I can't blame you for taking a break but the new drug does sound good. Yes Vindication IS Nice. As Always you will be in my prayers. David C

Listen to Cindy, that is great advice. Hope the pain is better. You are in my prayers David C

Gosh, what is UP with all these places not having any funding? BeckyCW - help! I see a need for some serious fundraising for cancer patients in need! What can I do? Karen C.

Makwa, I live in Virginia and I don't know how to help you but I'll see if BeckyCW has any ideas. She lives in California, but she is a professional fundraiser for children's cancer research and has worked with families, she might have some ideas or know who to ask for ideas. She is also my husband's big sister and she's on the board of this website. OK, that being said, I just want to say I like you! You have a great sense of humor and I like your online name, that is cool, and your easy going outlook toward religion. You are taking care of your elderly stepmom? You are one good guy! Keep us posted and I'll see what I can find out. Love and God Bless, Karen C.

Don, what is going on this week with your Mom? I also love your sense of humor. that will get you through some tough times. You should like a wonderful son and your Mom sounds like someone I'd like to sit down with and hear stories. we lived in Albuquerque for three years when I was a kid. I absolutely loved it. When we moved back east I think I cried our way across the country. Drove my Dad insane. God Bless, Karen C.

From one Karen to another: I have to agree with everyone else here. Sit there and hold his hand. Look at Dave S. I will pray for you and your husband. Please keep us posted. God Bless, Karen C.

When my husband Dave was diagnosed in the hospital where I took him to the emergency room, everything happened so fast. He had dangerously low sodium levels, so he saw a kidney specialist on Saturday night. That guy referred a pulmonary doc to see him because of the mass in his lung. That guy saw him first thing on Monday morning. He wanted to do a needle biopsy but couldn't because of where the tumor was. So he got a thoracic surgeon to see him That guy saw him later that day and did the surgical biopsy on Wed. He referred an oncologist to Dave which saw him on Wednesday and on Thursday he had his first dose of chemo. On Friday he met with the radiologist. I guess my point is: (1) don't waste ANY time; and (2) you probably need the needle biopsy, it surely must be less invasive than a surgical biopsy and must be the first choice of method of biopsy unless it's not practicable as in Dave's case. There's not much they can or will do until they know what kind of lung cancer you have (and hopefully it isn't cancer at all but an infection). Please keep us posted. God Bless, Karen C.

Yeah, he be the man!

Jane - I will pray for you to have a safe trip and for God to take good care of Alan, whatever that happens to be. He is one darn lucky guy to have a sister like you. In fact your whole family sounds awesome. God Bless you and your wonderful family, Karen C.

ChloesMom: AMEN!

Dean - what an awesome sounding lady. Oh my gosh. Thank you so much for sharing her story! Karen C.

Hey - both Becky (Snowflake) and Ginny gave you great advice. Definitely see your family doctor. When my husband was diagnosed I did. She adjusted the anti depressant I was already taking and gave me a good once over (and found a Stage II melanoma which may have saved MY life). Sometimes little physical ailments can wear you down and make your mental state a little weaker than you need it to be at times like this. Counseling is good, too. I saw my shrink just once at the beginning of this cancer hell and got a good atta girl from her. Don't dwell on the "what ifs" and the "why me" kind of stuff. You must accept the situation for what it is and do the best you can. When my husband was first diagnosed it was such a shock. He spent a week in the hospital. I would often go down the hall to a private visitor's room and bawl my head off. there was also a phone in there so sometimes I'd call our minister or a friend and bawl my head off. but after a few days I needed it less and less (but still had a good cry about every week or two). I think it was the fear of the unknown and the loss of control over the situation that made is so difficult. Hang in there. Karen C.

My quote: "It's not good, but small cell responds very very well to chemo and radiation - so they should look at it as an immediate death sentence." I meant to say "so they SHOULD NOT look at it as an immediate death sentence. Also, please know I am quite serious about my faith and my Christianity. I firmly believe that prayer - lots and lots of prayer - given up for Dave from all over the world, literally - had alot to do with saving Dave and removing the cancer from his body, along with the God-given genius of the medical community. I would never ever try to use my faith as a weapon or insinuate it as such. When I say I am praying for someone I am. God Bless us all, Karen C.

Rachell, hang in there. Waiting is the hardest part. My prayers are with you for a clean scan!!!!!! David C

MO - Get better - we miss your smiling face! Karen C.

Janet, I must tell you I am very glad that you have calmed down, got more information, and came back. I wasn't trying to condemn you at all, I see you mention David C's post several times (but this is Karen, not David . . . poor guy, don't want to stick him for this one!). I just wanted you to see how unfair you were being to take your frustrations out on these good people. And I think you saw that! I, like Fay, stand by what I said. And I'm glad you're back. And yes, I am a very devout Christian myself. I prayed for you several times a day over the weekend. I hate playing tough love but sometimes I think it's necessary. Who knows, maybe some of my prayer was answered. But I'm glad you're doing better, and you have a better handle on what's going on. I am getting a little chuckle because I got some PM's from folks thanking me for what I said - and those are the folks you call an angel here! I think we're all angels, just some of us are in disguise . . . sometimes hearing what we don't want to hear is what we need . . . Are your brother and his wife on the internet? If so, please invite them to this website. They will find alot of things clarified I think. It sounds like he maybe has extensive small cell lung cancer. It's not good, but small cell responds very very well to chemo and radiation - so they should look at it as an immediate death sentence. People can and do live with extensive stage SCLC. My husband has/had small cell limited, but it was just about to spread to his lymph nodes - who knows, it may have, he had quite a large tumor ON his lymph nodes - but he was cancer free after his treatment and one year later remains cancer free. We are here to offer your family HOPE. Hang in there and keep us updated. God Bless, Karen C.

I'm with Snowflake and Ginny. Karen C.

Berisa - so good to hear from you! You are the sweetest, kindest, most caring person, and I hope you stay with us because we all love you so much! Of course I have a special attachment to you because Faith is Chinese . . . . ! I can't remember what you do, but for some reason I think it's accounting? I think you should become a tour guide! Then maybe you can take groups of people from Hong Kong to the U.S. on tours and meet all of us in person! Or help people adopting. OK, my ideas, I'm crazy. Good to hear from you. I hope your mother is doing OK. It is hard to lose a spouse at such a particularly young age. God Bless you and your family, Karen C.

OK, I thought I read somewhere that the colon cancer had metastasized to her lung. It's colon cancer in her lung. I think. Karen C.

Laurie, I have an aunt who had some sort of mini-stroke and that happened to one of her eyes. Keep us posted. We've been wondering about you. Let us know what you find out on your Mom. God Bless, Karen C.

Also, we're not a 24 hour crisis hotline. We're a bunch of people trying to support each other through a very difficult time. If you look at different threads, you can see that most of them are answered within days, even weeks of the original postings. Karen C.

God bless ya', Bruce. Isn't a day at Dollywood like a real miracle these days? Glad to hear how well you are doing. Karen C.

Two things: 1. I echo what Becky Snowflake said. Very well put. 2. SEE MY REPLY TO YOUR POST "THANKS FOR NOTHING" UNDER GENERAL.

Dear JohnSis, I try to browse this board every day, and admittedly from work, as I work full time with a two hour daily commute, have a 2.5 year old daughter, to care for, as well as my husband, the cancer patient. So I don't have time for the compute at home. And I didn't see your post until I got on here just a few minutes ago, taking a break after cleaning house. Yep, I gotta clean house on Saturdays, after that full work. So myself, like lots of other people on this board, just don't have time for it 24/7. I found your other post in Family Members/Caregivers and I have this to say to you. You sound like a very hurt and even needy person. I think you are suffering from lots of things not related to your brother's diagnoses and this may be a straw on a camel's back. And I think it is very unfair of you to take your hostility and disappointment out on this board. I think it is very unfair, even immature, for you to post a survey of whether or not you should go see your brother when none of us know you at all, know nothing of your history of your relationship with your brother, etc. etc. So don't blast us all because we didn't answer your survey, especially early on a Saturday morning when no one is even awake and on the board yet. We don't all sit around living on this board, even the folks in the middle of their treatment and fight have a life to live. If you will just take a deep breath and calm down I think you will find an amazing amount of support and advice on this board. But everything takes time. Your brother and his family may need to absorb what is happening to them and figure out their game plan before they have alot of folks descending on them. Back off, stay in touch, and give them time fo that. I don't know whether you should go see him right now or not, I don't know the details yet. I don't know what else to tell you. I know it must be very difficult but you must be patient. When Dave was first diagnosed I didn't want a bunch of people telling us what to do, we needed to figure things out for ourselves, with some advice, and after that we were ready for everyone else. Also remember that being diagnosed with cancer is very very emotionally draining, on top of physically exhausting, for both the patient and the immediate caregivers. Keep us posted. I will pray for you and ask Christ to lift you up. God Bless, Karen C.

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.